bioethics/women’s studies/science, technology, and society
“This book is insightful, compelling, analytically rigorous, and politically relevant. It forms a complex, rich portrait of fetal medical technologies in the late twentieth/ early twenty-first century. Looking Within will be a major contribution to feminist studies of reproduction, medical sociology, medical anthropology, bioethics, history of medicine, and science, technology, and society studies. It also will be relevant to a popular audience interested in women’s health, reproduction, and medical technologies.” —Monica J. Casper, Department of Sociology, Vanderbilt University
Deborah Blizzard is Assistant Professor of Science, Technology, and Society at Rochester Institute of Technology. Basic Bioethics series
Looking Within Blizzard
RIT/ETC Photo
“In this most visual of eras, what bioethical issues are at play when doctors ‘scope’ the fetus? In what is the first comprehensive study of fetoscopy, Deborah Blizzard’s ethnography gives a stimulating look at the many meanings of this transgressive and transformative medical technology.” —Susan Squier, author, Liminal Lives: Imagining the Human at the Frontiers of Biomedicine
Looking Within
“Blizzard’s sensitive and fascinating ethnography explains the risks and rewards of fetoscopy in riveting and sometimes heartbreaking detail. Her obvious respect and affection for the clinicians, women, and families who undergo this little-known procedure mark Looking Within as a welcome addition to the burgeoning scholarship on reproductive imaging technologies and fetal politics in the clinic.” —Lynn M. Morgan, Department of Sociology and Anthropology, Mount Holyoke College
Looking Within A Sociocultural Examination of Fetoscopy Deborah Blizzard
A Sociocultural Examination of Fetoscopy
“Looking Within presents a deft analysis of fetoscopy, an emergent technology hyped as the salvation of ‘miracle babies’ which is actually an attempt to save dying fetuses. Through her beautifully written and thoughtful ethnography of the emergencies that bring pregnant women and their supporters to one U.S. hospital, Blizzard reveals the deep emotional and expert technical work that ground this controversial intervention. Blizzard conveys both the gravity and hope through which health care providers, researchers, and potential parents all enter the operating theater, and cope with its consequences. This is an excellent contribution to science and technology studies as well as to the anthropology of reproduction.” —Rayna Rapp, Department of Anthropology, New York University
The MIT Press Massachusetts Institute of Technology Cambridge, Massachusetts 02142 http://mitpress.mit.edu
978-0-262-02616-1
0-262-02616-3
Deborah Blizzard
In Looking Within, Deborah Blizzard examines the highrisk in utero surgery known as fetoscopy, considering it as both cutting-edge medical technology and as a sociocultural construction of patients, their social networks, and medical providers. She looks at the way individual experiences shape these procedures and how fetoscopy affects individuals (both patients and providers) on a personal, emotional level. Based on an elevenmonth ethnographic study of the fetoscopy practice at a community-based hospital and further interviews with former patients, Looking Within offers a vivid picture of the sometimes conflicted, often desperate, and always emotional lives of those undergoing fetoscopy, and challenges current assumptions about normal and appropriate pregnancy experiences. To convey the complex reality of fetoscopy, Blizzard draws from the experiences of the real patients she interviewed for the book to present the fictional case of Melinda and Joe, taking them through the entire process, from diagnosis to decision to outcome. She then discusses the emergence of fetoscopy as an accepted form of high-risk obstetrical care, how fetoscopy programs are established at hospitals, and why otherwise healthy women consent to surgery. Blizzard examines the use of fetoscopy in single-fetus and in twin pregnancies, looking at how religion, culture, society, and medical science inform any understanding of who or what is in utero (a baby? a tumor? a mass?). She also discusses definitions of loss and success, and the narratives patients and their social networks construct to make sense of them. Looking Within will help physicians and nurses improve the development and delivery of fetoscopy procedures, help patients understand this new technology, and help scholars evaluate fetoscopy’s bioethical, social, and cultural implications.
Looking Within
Basic Bioethics Glenn McGee and Arthur Caplan, editors Peter A. Ubel, Pricing Life: Why It’s Time for Health Care Rationing Mark G. Kuczewski and Ronald Polansky, eds., Bioethics: Ancient Themes in Contemporary Issues Suzanne Holland, Karen Lebacqz, and Laurie Zoloth, eds., The Human Embryonic Stem Cell Debate: Science, Ethics, and Public Policy Gita Sen, Asha George, and Piroska Östlin, eds., Engendering International Health: The Challenge of Equity Carolyn McLeod, Self-Trust and Reproductive Autonomy Lenny Moss, What Genes Can’t Do Jonathan D. Moreno, ed., In the Wake of Terror: Medicine and Morality in a Time of Crisis Glenn McGee, ed., Pragmatic Bioethics, 2d edition Timothy F. Murphy, Case Studies in Biomedical Research Ethics Mark A. Rothstein, ed., Genetics and Life Insurance: Medical Underwriting and Social Policy Kenneth A. Richman, Ethics and the Metaphysics of Medicine: Reflections on Health and Beneficence David Lazer, ed., DNA and the Criminal Justice System: The Technology of Justice Harold W. Baillie and Timothy K. Casey, eds., Is Human Nature Obsolete? Genetics, Bioengineering, and the Future of the Human Condition Robert H. Blank and Janna C. Merrick, eds., End-of-Life Decision Making: A CrossNational Study Norman L. Cantor, Making Medical Decisions for the Profoundly Mentally Disabled Margrit Shildrick and Roxanne Mykitiuk, eds., Ethics of the Body: Post-Conventional Challenges Alfred I. Tauber, Patient Autonomy and the Ethics of Responsibility David H. Brendel, Healing Psychiatry:Bridging the Science/Humanism Divide Jonathan Baron, Against Bioethics Michael L. Gross, Bioethics and Armed Conflict: Moral Dilemmas of Medicine and War Karen F. Greif and Jon F. Merz, Current Controversies in the Biological Sciences: Case Studies of Policy Challenges from New Technologies Deborah Blizzard, Looking Within: A Sociocultural Examination of Fetoscopy
Looking Within A Sociocultural Examination of Fetoscopy
Deborah Blizzard
The MIT Press Cambridge, Massachusetts London, England
© 2007 Massachusetts Institute of Technology All rights reserved. No part of this book may be reproduced in any form by any electronic or mechanical means (including photocopying, recording, or information storage and retrieval) without permission in writing from the publisher. For information about special
[email protected]
quantity
discounts,
please
email
This book was set in Sabon by SNP Best-set Typesetter Ltd., Hong Kong Printed on recycled paper and bound in the United States of America. Library of Congress Cataloging-in-Publication Data Blizzard, Deborah. Looking within: a sociocultural examination of fetoscopy / by Deborah Blizzard. p. ; cm.—(Basic biothics) Includes bibliographical references and index. ISBN-13: 978-0-262-02616-1 (hardcover: alk. paper) 1. Fetoscopy—Social aspects. 2. Social medicine. 3. Prenatal diagnosis. I. Title. II. Series. [DNLM: 1. Fetoscopy—psychology. 2. Sociology, Medical. 3. Culture. 4. Fetoscopy—ethics. WQ 209 B649L 2007] RG628.3.F47B5554 3007 618.3′2075—dc22 2006033361 10 9 8 7 6 5 4 3 2 1
With sincere appreciation for all that you have done, this book is lovingly dedicated to my parents Joan and Richard Blizzard
Contents
Series Foreword ix Acknowledgments xi Prologue
1
1 Fetoscopy as Lived Experience: A Closer Look
13
2 Why Fetoscopy? Why Now?: An Ethnography of a Medical Technology and the Emotions That Fuel It 41 3 Fetoscopy in Cultural Context: Fetal Politics, Reproductive Choice, Religious Experiences, and Maternal Blame 75 4 How to Create a Fetoscopy Collective: Define the Risks and Find Participants 107 5 Fetoscopy and the Single Fetus: Diagnostic Embryofetoscopy, Bladder Obstruction, Amniotic Band Syndrome, and the Technological Fix 137 6 Ligation and Twins: Making and Choosing Twins in High-Risk Pregnancy 157 7 Loss and Success: Social Networks and Constructing an Outcome 187 8 Final Thoughts on Fetoscopy Notes 225 References 237 Index 249
213
Series Foreword
We are pleased to present the twenty-second book in the series Basic Bioethics. The series presents innovative works in bioethics to a broad audience and introduces seminal scholarly manuscripts, state-of-the-art reference works, and textbooks. Such broad areas as the philosophy of medicine, advancing genetics and biotechnology, end-of-life care, health and social policy, and the empirical study of biomedical life are engaged. Glenn McGee Arthur Caplan Basic Bioethics Series Editorial Board Tod S. Chambers Susan Dorr Goold Mark Kuczewski Herman Saatkamp
Acknowledgments
This book would not be possible without the tireless efforts of many individuals. I began this project as a graduate student in the Department of Science and Technology Studies (STS) at Rensselaer Polytechnic Institute, and I conclude it as a professor at Rochester Institute of Technology. The ideas and interviews included in this book, have been thirteen years in the making. Starting with coursework examining reproductive technologies, eventually studying at a hospital creating one, and finally teaching undergraduates about such experiences have all led to this work. It is with deep gratitude that I thank all who have assisted me through this process. I would like to thank series editors Glenn McGee and Arthur Caplan. While a postdoctoral researcher at the Center for Bioethics at the University of Pennsylvania, I had the opportunity to meet and learn from both scholars. McGee’s expertise in reproductive technologies and Caplan’s ability to speak across disciplines and to nonacademic audiences demonstrated an admirable scholarship that I hope to emulate. I am honored that they saw my work as worthy of their series. Similarly I would like to thank MIT Press and acquisitions editor Clay Morgan for his unwavering support. I hope that all authors have as kind and responsive an acquisitions editor as him. I would also like to thank senior editor Katherine A. Almeida for her assistance in bringing this work to completion. Beyond MIT Press, I would also like to acknowledge the insightful comments offered by four reviewers who read an earlier version of this book. Although not all their comments were taken up in this work, their time, thoughtfulness, and assistance are greatly appreciated.
xii
Acknowledgments
This work developed from my doctoral dissertation, “The SocioCultural Construction of Fetoscopy.” Many faculty members in the Department of Science and Technology Studies at Rensselaer Polytechnic Institute proved invaluable in their tutelage and scholastic demonstration of solid theory and method. In particular, I would like to thank, P. Thomas Carroll, David Ellison, John Schumacher, Andrea Rusnock, David Hess, Langdon Winner, Sal Restivo, and Linda Layne for shaping my graduate studies and teaching me how to search for answers while continually reshaping questions. I would also like to thank the members of my dissertation committee for their efforts to help me refine my project. Thank you to Andrea Rusnock, Sal Restivo, Harry Roy, Lynn Morgan, and Linda Layne. I wish to offer special thanks to Sal Restivo, David Edge, and Linda Layne. As my mentors, they shaped my scholarship and, more important, helped shape my character and integrity. This work would not have been possible without them. In particular, Linda Layne has been my academic advisor, friend, and mentor since we began working together in 1994. Linda, thank you for everything that you have done to shape me into a socially concerned, critical researcher. Your warmth and compassion toward your studies and those with whom you work is a model of ethical, active research. Your thoughtfulness in your work is a model to which I continually aspire. Just as those at Rensselaer need to be thanked for their assistance in this project, so too do my colleagues at Rochester Institute of Technology. In particular, the Department of Science, Technology, and Society/Public Policy has offered time, support, and encouragement as this project drew to a close. I would like to thank those both inside and outside my department who encouraged me along this journey. I offer a special thank you to Thomas Cornell, M. Ann Howard, James Winebrake, Christine Keiner, Murli Sinha, Susan Barnes, Susan Foster, and Andrew Moore. Because of issues of informant confidentiality, I cannot thank publically the many real people who shared their lives with me. I am deeply indebted to the many patient-parents and professionals who entrusted me with their stories. My intent then and now is to present their stories, situations, politics, and beliefs with respect. Although not
Acknowledgments
xiii
everyone is quoted in this book, I believe that those cited within this text are at some levels representative of the many who do not appear. Even though individuals may not be cited, their stories shape my understandings and are equally important. I wish that all readers of this book could know every one of “my informants” and be as touched by their lives as I have been. Thank you also to the many professionals affiliated with the nonprofit research group with which Martinez worked and at whose invitation I came to the site, and those at Holy Names Hospital for your kindnesses and interest in my work. To be clear, I was guest of the research group who conducted surgery at Holy Names. The project passed Holy Names review, but my access badge was from the nonprofit. Since the nonprofit did not have a physical location, I refer to Holy Names as “the site.” Holy Names administrators were particularly helpful in supporting my stay. It was a joy to work alongside individuals so committed to their work as health care providers. Your openness and willingness to be analyzed is appreciated and a true indicator of your professionalism and belief in the goodness of your work. Three members of Holy Names Hospital must be thanked individually: Marc Martinez, Kay Brown, and Becky Miller. When I first contacted Marc Martinez to discuss my project, he was immediately interested in how fetoscopy could be examined social scientifically. Once I finalized my project, he worked to secure my place at Holy Names Hospital. He sent letters, filed forms, and extended me warm courtesies. His openness and willingness to be investigated critically is a model for interested, caring physicians, and I hope that all social scientists studying the context of medical encounters and the development of medical technologies are fortunate enough to find themselves working alongside such a willing and interested informant. My deepest affection, respect, and thanks to Kay Brown and Becky Miller for all they have done to teach me about fetoscopy, life, and friendship. There are no words to convey the depth of my gratitude, but I hope that the warmth and respect I have for them is clear within this book. As “fetoscopy nurses” they worked to make each patient-parent’s experience as positive as possible. Their commitment to compassionate care is a model of outstanding nursing practices.
xiv
Acknowledgments
Finally, I would like to thank my friends and family who stood beside me throughout this process. Thanks to my parents, Joan and Richard Blizzard and my in-laws Jim and Mary Ann Messinger. Also, sincere thanks to my twin brother, Doug, and his wife, Kristy Blizzard, and my sister-in-law, Kate Van Buren, and her husband, Bob Van Buren. Thank you also to my friends, many of whom held my hand as I grieved for many of the stories contained within these pages. Thanks to Staycee Sciranka, Sean Carey, Kate and Mike Klussman, Ed Schiff, Beth Abdallah, Mary Beth Kitzel, Susan Brown, Wenda Bauchspies, Jennifer Croissant, and Meredith Dalton. Final thanks are reserved for my husband, partner, best-friend, and confidant, David Messinger. There is no way to thank you for all that you have done for me over the years. Thank you for everything that you have given me, shown me, and taught me. Your love and encouragement make all things possible. This material was based upon work supported by the National Science Foundation under Grant No. 9710783. Any opinions, findings, and conclusions or recommendation expressed in this material are those of the author and do not necessarily reflect the views of the National Science Foundation (NSF).
Looking Within
Prologue
A unique procedure begs an unusual presentation. I hope that this book, and the emotions that run through it, offer you that. My intention is to merge scholarly literatures with the personal hopes and fears of fetoscopy patient-parents and those who care for them, to enhance understanding of the social and cultural (or, sociocultural) context of in utero fetal surgery, or “fetoscopy.” I witnessed my first fetoscopy in spring 1993, less than a year into my graduate program in Science and Technology Studies at Rensselaer Polytechnic Institute in Troy, New York. As a young graduate student interested in medicine, science, and technology, I willingly complied when my professor recommended that I attend a bioethics conference jointly sponsored by the nearby Albany Law School-Union University and Albany Medical College. I headed to the conference unaware that the course of my studies and life were about to change. Although initially excited by the bioethical topics, I grew weary as the day progressed. As presenter after presenter took the stage to discuss issues of privacy, autonomy, and rights, I found myself easily distracted. Though each topic was interesting, the totality of the conference was overwhelming. I wanted to leave early, but knew that I could not. Not only would my professor expect a synopsis of the day, more to the point, I sat in the middle of a lecture row and could not sneak out without causing embarrassing disruptions. I let my mind wander in failing attempts to daydream the remaining afternoon away. It was toward the end of day that I saw a television and VCR wheeled center stage. My curiosity returned. Looking back, I acknowledge the sacred student realization, “A movie!”
2
Prologue
Without much fan-fare, a video began: an in utero fetus appeared on the screen. It was flesh toned and moving. It was alive. I was mesmerized and could not look away. The presenter discussed the technique by which he captured the images, a procedure he called “embryofetoscopy” or “fetoscopy.”1 He explained that the procedure combined tiny needles and endoscopes to reach inside a pregnant woman’s uterus whereupon he could make medical diagnoses on a fetus. As he explained the technique and his hopes for the future, I stared intently at the screen; I was peering inside some woman’s uterus, seeing a fetus that was yet to be born. Questions raced through my mind: Whose was it? Where was it headed? Was it going to live? These questions have not stopped. Following the presentation, I returned, renewed, to my studies and immediately set my energies toward exploring this technique. I read medical journals with zeal and confusion. I became interested in reproductive politics. I became obsessed with scopes and fetuses. I became obsessed with fetoscopy. This book is the outcome of my studies; it is the creation of obsession and fascination. The work is intended to offer glimpses into the sometimes conflicted, often desperate, and always emotional lives of those undergoing and offering fetoscopy. To accomplish this task, I explore the multiple explanations surrounding fetoscopy development and use to understand better the processes through which, and reasons by which, individuals experience and build these powerful procedures, and the corollary, how these procedures affect individuals. My examination highlights the ways in which fetoscopy develops its many, and at times divergent, social and cultural meanings. This book is intended to give readers the opportunity to get to know what it is like to undergo a procedure and what it is like to build the fetoscopy experience. Therefore, it not only discusses the emotional work and experiences of patient-mothers, their companions, and physicians and nurses, but also is the product of my emotional work.2 Within the following pages, I strive to take account of my emotions and those of the individuals who worked with me in researching this topic and becoming involved in the lives of those closest to fetoscopy. My hope is that this book will make a difference in the continued development and delivery of fetoscopy procedures and by so doing will help create medical protocols and improve individual experiences with the techniques.3
Prologue
3
Fetoscopy is little known in nonmedical venues. When I interviewed patient-parents about their experiences and asked why they agreed to be interviewed, a number of respondents explained that they wanted other people (especially potential patients) to be familiar with this newly emergent technology. Many found it difficult to find information on fetoscopy, and as a result struggled through not only learning about their medical ailments, but also learning about the possible medical procedures to treat their conditions. In answer to these interviewees, and as noted earlier, I hope that this book will familiarize the reader with fetoscopy and its current and potential uses. As reproductive politics continue to take center stage in popular culture and U.S. politics, I hope this book will serve as an entry point for a number of readers to examine their own reproductive decisionmaking as well as that of others. I join feminists who challenge readers to rethink or reframe how they envision “choosing” to alter fetal development in utero. There are many explanations for the meanings attributed to altering a pregnancy. As pregnancies and pregnancy decisions become more public, it is important to ask what is happening, to whom, and why. By drawing from examples of fetoscopy decision-making, this book highlights the difficulty of making decisions and living with and through the outcomes. This book joins a growing literature challenging the assumption that feminism is at odds with women who pursue fetal treatments that transgress their own bodies for the sake of the fetus within. As chapter 2 details, this research is ethnographic. From 1997 to 1998, I conducted social scientific research at a small Catholic, women’s hospital, “Holy Names Hospital,” to learn how they created and delivered fetoscopy procedures. I watched surgeries and interviewed those who came in contact with the newly emergent technology. I worked alongside health care providers to understand better the technological, social, and cultural complexities of their techniques. Since that time, I have watched this fetoscopy research team grow from a fledgling group of healthcare providers at a small community-based hospital into a world-renowned program. In May 2005, I returned to the hospital to check on the department’s development. All seemed well.
4
Prologue
The practice had grown, new offices been built, and a large sign outside the hospital included the program as a department. Less than six months after that visit, I received a phone call from the Fetoscopy Research Coordinator, a good friend of mine. Her usually jovial tone was gone as she simply said, “I have something to tell you. Are you sitting down?” My heart raced as I thought of every terrible thing that could befall any one of my friends in the department. I assured her I was sitting down. She continued, “We aren’t doing fetoscopy anymore. The department is closed and the doctor is leaving for another hospital.” I was in shock.4 Though I always knew that fetoscopy was an odd fit at a community-based hospital, it nonetheless fit. For nine years use of fetoscopy at the hospital had grown, and just when it appeared to be taking off, it was gone. Following years of development in a small Catholic women’s hospital, some of the medical professionals associated with fetoscopy, notably Marc Martinez (a world renowned leader in fetoscopy) moved his practice, and thus fetoscopy, to a large research and teaching hospital. Martinez and two other members of the “fetoscopy team” left the familiarity of Holy Names and set off to another hospital—one more familiar with cutting-edge surgery and medical technology development. This change will no doubt affect how fetoscopy is delivered in the future; however, many of the ways in which fetoscopy began to “stabilize” as a medical procedure happened during its development at Holy Names (Bijker, Hughes, and Pinch 1987). The medical procedures and social environments that are fetoscopy will now be recast at this larger university hospital. The intriguing question to be explored over the next decade of fetoscopy development is how much will the university hospital alter fetoscopy delivery and how will fetoscopy delivery (including those who create and undergo it) alter the university hospital? If hospitals have embedded institutional histories, perhaps, fetoscopy does, too. Perhaps the ways in which the fetoscopy team developed the procedures and the social interactions that surrounded and sustained it at Holy Names will, in turn, alter the research hospital in which it will continue to grow. It is likely that many of the patient issues that arise in the communitybased setting will not alter as women now undergo fetoscopy at a large hospital (e.g., experiencing confusion, fear, blame, and guilt); however,
Prologue
5
some aspects of the policies governing patient care will change. What is most important for this analysis, however, is to recognize that during the nine years in which fetoscopy was not in a research hospital, it did develop and it did affect those around it. These effects are part of the history of fetoscopy development and carry with it into this new setting. This unexpected turn of events makes knowing what happened at the community-based hospital even more consequential. It is imperative that this book offer as many inroads as possible to understand the lived experience of these procedures. There are many potential readers: medical staff, ethicists, social scientists, students, and patients, to name a few. Each brings particular questions and assumptions regarding fetoscopy efficacy and reproductive procedures and politics. The format of this book is designed with reader differences in mind. I hope to add to social scientific literature using as little academic jargon as possible to enable medical professionals, pregnant women, and an interested public a chance to get to know a fetoscopy site and to feel some of the hope and despair that is a daily part of fetoscopy care-giver and patient lives. Though the scholarly literatures in which this analysis is based lie at the intersection of science and technology studies, bioethics, and medical anthropology, the manner in which it is written seeks to transgress these fields and professional boundaries. To reach this wide-ranging audience with clearly stated social analytic tools, I break from academic convention and begin this book with a short story. It is not social theory, explicit critique, or interview analysis. Fetoscopy is an emotional experience. It is also exciting, cutting-edge medical technology. It is easy to become lost in the hype of “new frontiers” and “miracle babies” and lose sight of the real lives that are touched by these powerful, life-changing procedures. As I studied fetoscopy, I began to wonder how I might convey the emotion of these events to readers who likely did not know anyone who had undergone a procedure. As I watched and listened, I wondered, what would lead an otherwise healthy woman to consent to surgery? What would lead physicians and nurses to pursue medical technology development with such determination? As I learned more, and this book will show, there were no simple answers. While each patient and experience was unique, one thing remained constant in all fetoscopy cases: fetoscopy was and
6
Prologue
remains emotional work. Each case was at once private and public, intimate and extrinsic. As patients passed through our doors their faces began to blend, but their words and experiences stood out and hit chords with even the most emotionally detached fetoscopy team members. As each day of my study passed I wondered, how will I report this in a way that captures this essence? In an effort to help readers get to know fetoscopy as a real procedure with emotional impacts, the first chapter offers an account of a couple undergoing a surgery, Melinda and Joe. The story is based on an amalgamation of people that I met while conducting this research. The reason for this chapter must be made clear: fetoscopy is a real procedure that affects real people. I do not want this book to use interview material that is easily forgotten as the next words are read or the next woman tells part of her story. To understand fetoscopy, every reader should have the opportunity to “meet” someone who has undergone the procedure and to be with her through her experiences. I hope that you come to know Melinda and Joe, and keep them in mind as you read the remainder of this book. Following this chapter, every quote is offered by individuals who consented to be interviewed about their experiences. To ensure confidentiality, the first chapter is intended to help you feel the investment that those cited within this book have made in their fetoscopic experiences. Following the story of Melinda and Joe, chapter 2, “Why Fetoscopy? Why Now?: Ethnography of a Medical Technology and the Emotions that Fuel It,” details the methodology used in this work and my personal politics that, in part, fueled the study. I outline a history of fetoscopy starting in the 1970s and explore the reasons why fetoscopy never took off as a reproductive procedure until the early 1990s, and even now continues to struggle to find a place in high-risk obstetrical care (perinatology). This chapter marks the beginning of social science critique of fetoscopy and acts as the foundation on which the remainder of the book rests. Chapter 3, “Fetoscopy in Cultural Context: Fetal Politics, Reproductive Choice, Religious Experiences and Maternal Blame and Failure,” follows the questions of why and how fetoscopy emerged and how I came to study it while broadening the discussion of fetoscopy into larger
Prologue
7
social and cultural concerns. I examine the history and current context that makes fetoscopy a viable prenatal procedure in the twenty-first century at a community-based hospital. Further, I explore how fetoscopy and reproductive politics are borne out in Catholic doctrine, and more important, at Holy Names Hospital. I also examine the role of maternal blame and failure in leading pregnant women to consent to fetoscopy. This chapter addresses larger contextual issues that frame fetoscopy use in general (as well as adds individual interview material) to offer a fuller examination of how and why fetoscopy development occurs in some medical establishments and addresses some of the positive and negative effects of its use. Chapter 4, “How to Create a Fetoscopy Collective: Define the Risks and Find Participants,” turns from broad social analysis offered in the previous chapter to investigate the ways in which fetoscopy workers at Holy Names have come to accept or reject the procedure within their hospital. This chapter continues the themes of religion from the previous chapter (how and why fetoscopy develops at Holy Names Hospital) and introduces the notion of “risk” as experienced by pregnant women and those who care for them. I explore how and why Holy Names trains other medical professionals internally and externally (e.g., publications and research) to move fetoscopy from the fringes of medical development and use to become an integral part of hospital practices and ultimately to develop into a world-renowned center for fetal therapy. Chapter 5, “Fetoscopy and the Single Fetus: Diagnostic Embryofetoscopy, Bladder Obstruction, Amniotic Band Syndrome, and the Technological Fix,” is an analysis of the many ways in which fetoscopy is used on singleton pregnancies (one fetus). Although fetoscopy is generally used for twinning gestations, it also offers single fetuses potential treatment options. This chapter presents a general discussion of the possibilities of diagnostic procedures including its potential for genetic therapy, and links it with a discussion of treating unusual singleton conditions (i.e., boutique medicine and orphan conditions). I examine the importance of visualization in some perinatology advances and use two case studies to explore its use: amniotic band syndrome and bladder obstructions. Following these discussions I address the “Achilles’ heel” of fetoscopy: amniotic membrane rupture (Deprest, Lerut, and
8
Prologue
Vandenberghe 1997). Although fetoscopy may embody great hope for otherwise lost pregnancies, until the side effects of its use are better understood and controlled, its potential place in perinatology and continued advancement and proliferation cannot be assured. By examining a variety of ways in which fetoscopy is currently used and ending with its frailty, this chapter highlights the many ways fetoscopy can be used while underscoring that for all the hype and hope for the technique, a seemingly simple, yet medically complex side effect may limit its development. Chapter 6, “Ligation and Twins: Making and Choosing Twins in High-Risk Pregnancy,” introduces the most common use of fetoscopy: to separate identical twins in utero when one fetus increases ailments of the other. Utilizing cases studies of two conditions, twin-to-twin transfusion syndrome and acardiac twinning, I explore the metaphorical doppelganger of one twin feeding off its co-twin to survive (c.f., Strauss 1996). In this chapter, I examine how women and their caregivers come to know these in utero entities and what place religion, culture, and society as well as medical science play in determining who or what a pregnant woman carries inside her and what are acceptable treatment options for these conditions. This chapter continues themes of religion and visualization from previous chapters (e.g., how personhood is created in the context of fetal technologies and visualization) and expands it into discussions of rare twinning conditions. Chapter 7, “Loss and Success: Social Networks and Constructing an Outcome,” examines “what counts” as a success and what it means to suffer a loss. As evidenced in the previous chapters, I argue that all fetoscopy procedures are carried out in, and shaped by, a context of loss. It falls to the individual woman and her social network to find creative, emotional, and at times conflicting narratives to make sense of what seems too often to be a senseless situation. I argue that all losses (of all sorts) are in fact full of meaning and sense; however, it is only in finding a place to speak about such loss, and developing policies to reflect and accept such loss, that fetoscopy patients may ultimately find a sense of relief. Chapter 8, “Final Thoughts on Fetoscopy,” offers a summary of fetoscopy and a look toward the future of these continually developing procedures. Here I address my own political concerns surrounding
Prologue
9
fetoscopy proliferation and my hope that its ultimate use be informed by some of the findings and themes presented in this work. As the first social scientific analysis based solely on fetoscopy development, use, and effect, this book covers a wide range of fetoscopy issues, including its history and the varied uses physicians pursue today as well as some exciting, yet questionable, possible uses for it in the future. Throughout this book, themes such as risky decision-making, moral and religious contexts, as well as individual hope and fear will appear. Each chapter relies on these themes; however, depending on the particular chapter some themes will emerge more clearly than others. Taken together, though, these themes form the sociocultural backdrop on which fetoscopy development and use play out. It ultimately falls to the individuals interacting with fetoscopy to form an environment in which fetoscopy does or does not make sense. This work makes these interactions and environments visible. A Note on the Conditions Fetoscopy can be used on singleton and multiple gestations as a diagnostic and operative procedure. Although each condition will be explained within this book, it is useful to offer a short summary here of the conditions that I will discuss in the remaining chapters. Although relatively few conditions are amenable to fetoscopic diagnosis and therapy, the list continues to grow. Many conditions appear in this book, however, most often cited are the following:5 Bladder Obstruction Approximately 1:5000–8000 male fetuses develop blockages in the urethra. If the blockage is not relieved, severe kidney damage and decreased urination may ensue, leading to low levels of amniotic fluid. Decreased amniotic fluid hinders lung development and may lead to in utero death. With operative fetoscopy, physicians insert a small needle and scope device in utero to identify the blockage and, if possible, fix it. Without treatment, 30 to 50% of the fetuses die shortly before or after birth. Acardiac Twinning An extremely rare condition affecting 1:35,000 pregnancies, acardiac twins are identical twins in which the zygote split
10
Prologue
relatively late in gestation. With this late separation, one twin generally develops “normal” physiology and characteristics while the other twin does not. The acardius lacks or has a rudimentary heart (therefore the name “a”-“cardiac”), and often also lacks a head and/or arms. The result is that the “healthy” twin’s heart acts as a pump for both twins and ultimately expends itself due to the high pumping rate. This problem is compounded by the acardius’ physiology, which tends to bloat with excess blood, while the “pump” twin slowly grows anemic. If left untreated, approximately 50 to 75% of these pregnancies end in the loss of the viable co-twin. With fetoscopic ligation (tying off an umbilical cord) the success rate for a live birth increases to 70 to 80%. Twin-to-Twin Transfusion Syndrome (TTTS) Approximately 6000 fetuses are affected with TTTS per year and 4000 will die.6 Similar to acardiac twinning, TTTS is a rare condition affecting identical twin fetuses in which the fetuses share blood disproportionately. The uneven sharing of blood leads one twin to grow anemic, while the other bloats with excess blood. At the same time the fetus receiving excess blood urinates at a higher frequency, leading to increased amniotic fluid in one amniotic sac (assuming they are in separate sacs; in rare cases they share a sac). The anemic fetus is unable to urinate and its amniotic sac does not fill with amniotic fluid. The low amount of amniotic fluid makes the twin appear to be “stuck” against the uterine wall while the co-twin’s amniotic sac fills at a dangerous rate. TTTS can lead to neurological damage or death of one or both fetuses. Fetoscopy combined with in utero laser surgery, (photocoagulation) of the shared placenta disrupts the blood flow and may separate one fetal circulation from the other.7 With laser surgery, success rates for one live baby is 74 to 80%, with a 4% rate of cerebral palsy (if the co-twin dies in utero). In severe cases in which one fetus is no longer viable, ligation of the dying fetus is an option.8 With ligation, the success rate for one live baby is 90%; however, it remains possible that the survivor may suffer neurological or other impairments. Amniotic Band Syndrome A condition affecting approximately 1:1200 to 1:1500 live births, amniotic band syndrome is still not well understood and competing medical theories exist (Quintero, 2002c). However, a leading argument is that lesions develop in utero and adhere to the
Prologue
11
developing embryo-fetus. These materials wrap around the fetus much like a tourniquet, preventing parts of the fetus from growing. When appendages (e.g., arms, legs, fingers, etc.) are affected by amniotic band syndrome, the constriction may lead to in utero amputations. To treat amniotic band syndrome, physicians identify the band with ultrasound and then use operative fetoscopy to enter the womb and cut the bands, thus freeing the fetus and allowing it to continue growing and developing without the hampering, dangerous bands to constrict it. These statistics should be used as general guides when reading this book. Statistics change over time and with research organizations. The most recent statistics can be found through Internet searches or your health care provider. To extend as much anonymity to my informants as possible, all names, including health care organizations, persented within this book are pseudonyms.
1 Fetoscopy as Lived Experience: A Closer Look
The following short story is a composite sketch of many fetoscopy experiences. The story of Melinda and Joe is not “pure fiction”; it combines facets of many real experiences and is intended to offer a glimpse into the lives of those who create and undergo fetoscopy and to enhance your emotional purchase into a fetoscopy experience. As this book continues, many women’s stories will become fragmented. You will read parts of an experience, but never know a situation in full detail. Although I quote real women, their words reflect only small parts of their larger experiences. It is impossible to tell everyone’s story in detail; in fact, such detail would threaten the women’s anonymity. This short story offers a fuller, more comprehensive description of the fetoscopy experience without threatening individual anonymity. Before you begin to read about fetoscopy and analyze those who create and undergo it, I ask you to imagine the following story: get to know Melinda and Joe as they come to terms (as do all fetoscopy patients) with the fact that their pregnancy is not what they expected and fetoscopy treatment may be their only option to save it. Melinda and Joe Melinda and Joe are a young, upper middle-class couple in their late twenties. Joe is an only child whose family is Presbyterian, though they do not attend church or worship except for Easter and Christmas. Melinda’s mother’s family are practicing Catholics, and her stepfather is Jewish. Her mother left the Church and now attends Temple with her husband on high holidays. Melinda never knew her biological father. Her
14
Chapter 1
stepfather adopted her and her older sister when they were two and four years old, respectively. Since that time, he has always been “Dad.” Melinda and Joe consider themselves agnostic and sometimes attend religious services when other family members ask the couple to join them. Melinda and Joe attended the same university. Her major was marketing; his, business. They met their sophomore year and were married in a nondenominational, outdoor ceremony shortly after graduation. Three years into their marriage, they bought a house and decided to start a family. After nearly a year of trying to conceive, Melinda thinks she might be pregnant. They purchase a home pregnancy test and decide that they’ll test that weekend. The following Saturday, Melinda follows the instructions on her E.P.T. kit. Together, she and Joe joke that they should be in a commercial, as they slowly watch the picture frame on the stick indicate that she is pregnant. They immediately call friends and family to announce their good news. Monday, Melinda makes an appointment with a local obstetrician to confirm what she already knows. Sure enough, she is “officially” pregnant. The obstetrician instructs her to take prenatal vitamins and watch for any signs of trouble. Melinda schedules her next few appointments and heads home. Her pregnancy continues and she and Joe begin buying baby things and discussing names. Melinda is excited to be a “mom” and finds herself staring at strangers’ children, wondering if her child will look like him, walk like her, cry like him, laugh like her . . . Sometimes she daydreams about the sports her child will play and the piano lessons that he or she will likely hate. She’s due just before Thanksgiving, three days after her father-in-law’s birthday. If they have a son, will he be a namesake? How would her dad react to that? Maybe the baby will be a girl? That would make it easier. The days pass, and she feels that she is getting very big, very fast. When she mentions this to friends and family, they calm her fears and tell her not to worry. Every pregnancy is different, and since this is her first pregnancy, maybe this is how her body responds. It is her sixteenth week, and although she is becoming physically uncomfortable, she looks forward to her upcoming ultrasound. When she and Joe go to the exam she bemoans her large size. Joe smiles and
Fetoscopy as Lived Experience
15
puts his arm around her, “You look beautiful,” he says aloud, then quietly whispers, “both of you.” Melinda rolls her eyes and jabs Joe in the ribs. The ultrasound technician pretends not to hear and laughingly asks, “Wouldn’t it be something if there were more than one?” Melinda and Joe laugh. Melinda lies down on the table and the ultrasound technician begins the exam. She puts “blue gunk” on Melinda’s belly and proceeds to run the transducer over her abdomen, looking carefully at the screen. Half the time she looks at Melinda, asking her questions. How old are you? Is this your first pregnancy? Where did you go to school? What do you do? Do you have a name picked out? Do you want to know the sex? She continues searching and the conversation drops off. Her eyes squint as she dutifully makes out detail. She begins typing on the screen. Melinda asks what she is doing. The technician replies with a smile, “Well, I’m just measuring Baby A.” Melinda asks, “What do you mean Baby A?” The technician slowly moves the transducer to the other side of her belly, “Because this is Baby B.” Melinda and Joe search the screen trying to make out the fuzzy appearances. The technician looks at the parents. “You have twins,” she says. Melinda and Joe are stunned. They stare blankly. “No, really,” the technician says, “you have twins.” With that, the technician continues making measurements. Melinda and Joe turn from the screen and stare at each other. Although they don’t speak, the same questions race through their heads: Twins? How did this happen? Is she sure? Is she right? Twins. Joe stammers, “Are you certain? I mean there’s no twins in our family.” Melinda nods in agreement, her body is stiff with shock and she hears the blood rushing in her head. The technician shrugs. “It happens. You definitely have twins. There are two.” The technician tells them that she has to get the obstetrician. The obstetrician comes in and shakes their hands. “I hear there are twins,” she grins as she sits at the ultrasound. Melinda and Joe laugh nervously. “That’s what we hear, too,” Joe replies, still stunned. He reaches for Melinda’s hand and gently strokes her trembling fingertips. The obstetrician takes the transducer and begins to look at the fetuses. Like the technician she, too, types on the screen as she takes fetal
16
Chapter 1
measurements. She is a tall, quiet woman, wearing a white clinical coat and glasses perched on the end of her nose. Unlike the technician, she doesn’t spend a lot of time talking to either Melinda or Joe. As she continues her examination Melinda and Joe begin to smile. It starts to settle in that they are parents of twins. “What do you think?” Melinda whispers to Joe, her eyes only partly masking her concern and hope. “Well, we wanted a family. Looks like we got one.” Joe’s eyes begin to fill with tears and he quickly wipes them away before the obstetrician notices. Melinda smiles, eyes beaming, she carefully mouths, “softie.” Joe shrugs, smiles and holds her hand even tighter than before. The obstetrician continues her survey. As the minutes pass, an air of concern begins to fill the room. Melinda asks, “Is anything wrong?” The obstetrician continues looking at the screen replying, “With twins, we just like to be certain that things are okay.” She keeps clicking. “You’re in your sixteenth week?” She asks. “Yes” replies Melinda. The obstetrician stops typing, turns from the machine and looks at Melinda. The room is silent. After a moment, the obstetrician explains, “Well, you do have twins. They appear to be identical.” “Identical twins!” Joe repeats. “Yes, they’re identical. At least it appears that way,” says the obstetrician. “But there’s a problem—a potential problem.” Melinda and Joe look at each other. “One fetus, Baby A, is considerably larger than Baby B. You also have a large amount of amniotic fluid. I think it’s possible that you have a condition called twin-to-twin transfusion syndrome.” Melinda and Joe continue to look at each other. The obstetrician continues explaining. “It’s a condition that affects identical twins. It’s rare. What happens is there’s a sharing of blood that’s disproportionate between the fetuses. One bloats with excess blood and one becomes anemic. There’s also an issue of increased amniotic fluid, which could lead to ruptured membranes. There are a number of problems associated with this condition. You’ll want to have it looked at by a specialist. I’m going to refer you to a perinatologist.”
Fetoscopy as Lived Experience
17
Melinda and Joe stare at the obstetrician. It’s obvious they don’t know what a perinatologist is or what he or she might do for them. The obstetrician looks at them and says, “High-risk obstetrics. He specializes in high-risk obstetrics.” “High-risk?” Melinda repeats. “Yes,” says the obstetrician, gently touching her arm. “This is a highrisk pregnancy.” Melinda and Joe turn to each other as the obstetrician gets up. “I’ll have my office call his office. We’ll make an appointment as soon as possible. Why don’t you stay here for a few minutes. Let’s see if we can get through to him now. You might be lucky. He might see you this afternoon.” Melinda and Joe sit in the room alone. The faint glow of the ultrasound machine is still iridescent as the door shuts behind the physician. Neither Melinda nor Joe say a word. They sit and wait. About 15 minutes later, the physician returns. “We’re in luck,” she says, “he can see you today at three o’clock. Why don’t you head on over?” The physician gives them the address and Melinda and Joe begin to sit up. She extends her hand to both of them. “Good luck. If you have any concerns, you can always call me, but really, you’ll be better off with him.” Melinda and Joe have a few hours to spend before arriving at the perinatologist’s office. They decide to go for lunch. They stare at uneaten food and begin to wonder what happened. Finally, it’s time to leave and they head to the perinatologist’s office. The car ride is long and silent. Melinda finally murmurs, “I don’t know what I did.” Joe murmurs back, “I don’t think you did anything.” Melinda seems unswayed by his comments and stares out the window. Although she’s lived in this town for most of her life, nothing looks familiar, it’s all shrouded in a confusing haze. They arrive at the perinatologist’s office and are taken to the back room where the ultrasound machine sits besides the bed. Unlike a few hours before when she saw an ultrasound machine and her heart skipped with joy and anticipation, now seeing the machine is painful and she almost doesn’t want it turned on. The reality of the situation continues to grow. What will this physician see?
18
Chapter 1
She lays down on the bed and Joe sits beside her. She’s told that the perinatologist will be in shortly and she waits. About 20 minutes later, the perinatologist walks through the door. He introduces himself, shakes their hands and turns on the machine. “I understand that you may have twin-to-twin,” he says. Joe looks at him subtly nodding in affirmation. His eyes come to rest on his wife’s naked belly. “That’s what they told us this morning,” Melinda answers. The physician begins to run what appears to be the exact same test as her obstetrician. “Yes,” he says, “you have twin-to-twin. You have a pretty serious case of it, too.” His words fade off as he cocks his head, peering at the screen. He continues looking and measuring. Melinda closes her eyes. She can’t look at the screen and Joe’s head hangs low. The physician continues explaining what he sees. “The one fetus here, Baby A, is quite large. Baby B is smaller. Here’s where the amniotic fluid is disproportionate.” He continues using statistics and numbers while pointing at the screen. It’s a blur at this point. Neither Melinda nor Joe really want to hear any more. He turns off the machine. They look at him. The perinatologist sighs as he reaches for Melinda’s arm, “You need to make some serious decisions, I’m sorry. There are treatment options, and of course there is termination. You can always try again.” Melinda turns to him, “What can be done? Is this treatable? Can we fix this?” After months of trying to conceive and four months of being pregnant, Melinda does not want to terminate. “It’s hard to say if it can be fixed, but there certainly are treatment options,” the physician begins to explain. “Most commonly, people treat this with what we call serial amniocentesis.” Both Melinda and Joe are familiar with amniocentesis, but they’re not certain why it would be serial. “What do you mean?” Joe asks. “Well, one of the problems is the excess amniotic fluid. That’s why your back hurts. That’s why you’re so big right now.” Melinda nods. “What we’ll do is we’ll go in and drain off the fluid as your pregnancy continues. We’ll monitor the fetuses and their development, looking for any signs of distress.” “Okay,” she says, “how often does that happen?”
Fetoscopy as Lived Experience
19
“It depends. It may happen once a week. It may happen multiple times a week, and of course the amount of fluid that we draw off depends on how quickly the fetuses make it.” “Isn’t that risky?” Melinda asks. “Well, yes, there’s always a risk associated with amniocentesis.” “What are the other options?” Joe asks. “Well, there’s surgery.” The perinatologist replies. “Surgery!” Melinda exclaims. “Yes, there’s surgery for this. What they’ll do is go in and identify the placenta—because the problem is in the placenta, you see.” He begins to sketch a picture of a placenta on the back of a prescription tablet. He continues, “They’ll make small incisions in your abdomen and enter the uterus. Then they insert lasers through the incisions and apply laser energy to the parts of the placenta where the blood is shared disproportionately. They call it fetoscopy.” As his drawing becomes more elaborate with a uterus, lasers, placenta, and stick figure fetuses, Melinda’s heart sinks. He continues, “In essence, Baby A gets his share, Baby B gets his share, and hopefully, both boys survive. At least that’s the theory.” Melinda’s eyes begin to widen. “Well, that sounds risky, too,” she stammers. She shakes her head in disbelief. The physician’s words slowly repeat in her head. “They’re boys?” she asks. “Yes, you didn’t know?” The perinatologist looks concerned and sorry that he let it slip. “No, we didn’t. It doesn’t matter, I guess.” Melinda’s eyes dart between the perinatologist, Joe, and the ultrasound machine. “Isn’t surgery risky, too?” The physician nods. “Yes, it’s surgery. All surgeries are risky. The other problem is it’s not offered a lot of places. You’ll have to travel. I can’t do it. I can do the serial amniocentesis for you, but I can’t do the surgery.” Melinda and Joe nod. Joe asks, “Well, what are the advantages of the surgery?” “Well again, in theory,” the physician says, “surgery takes care of the problem. If the problem is disproportionate blood flow, it might minimize or stop it.”
20
Chapter 1
“What are the risks?” Melinda asks. “Of the surgery?” The physician replies. “No, the condition. What are the risks? What could really happen? Do we need to do anything, really?” Melinda’s eyes plead for reassurance; she is desperate to hear good news. “Well,” the physician says, as he touches her arm, “there’s a chance that one fetus will die.” Melinda looks at him, too shocked to cry. He continues, “The problem is, if that one fetus dies, there’s also a chance that it may bleed into the surviving fetus.” “And if that happens?” Melinda asks. “Then they both might die, or the surviving fetus might have a higher rate of neurological impairment. It’s upwards of 25%, or so. Of course, one may die and the other may live and not have problems. It’s difficult to say what will happen, only what could happen. I’m sorry, but this is a tricky condition and we’re still trying to understand it and find ways to treat it.” “Oh God.” She whispers. Tears begin to form in the corners of her eyes. She chokes them back, I need to be strong. I need to listen. I need to think. She repeats to herself. The tears dissipate and hollowness fills her stomach. “And what about surgery?” Joe asks, “What then? What about the death rate? And the neurological issues, what about them?” “Well,” says the physician, “there’s a chance that they’ll die, whether or not you treat them. The main difference that I can see with the surgery is that if one of the fetuses dies in utero, surgery should decrease the potential for neurological impairment of the surviving baby. It comes in closer to 5%, or so.” Melinda turns to the physician, “Well that’s good, isn’t it?” “Well, it depends on what types of risks you want. It depends on what you’re willing to go through. It may even depend on whether or not your insurance is willing to cover it. Another thing to consider, as I mentioned earlier, there aren’t many centers that offer this kind of treatment. You’ll have to travel. The closest center, and the one I’ve referred patients to in the past, is a four-hour flight.” Joe’s eyes light up. “You’ve referred others? What happened?”
Fetoscopy as Lived Experience
21
The physician begins to stand. “Well, one couple has two beautiful daughters. And, the other, well . . .” the physician’s tone lowers as do his eyes. After a moment he looks at Joe and simply replies, “they lost the pregnancy. They never made it to surgery. The night before the surgery, they lost it.” The physician continues to get up and head for the door, “Why don’t I let you two discuss this for awhile? Or if you’d like, go home and discuss it. If you decide to have the surgery, I’ll start making calls. If you decide to have serial amniocentesis, we’ll have to set up your first few appointments. Now, I can drain some amniotic fluid today to make you more comfortable, but if you go with surgery, I’d prefer not to and let the surgeon decide what he wants to do.” Melinda turns to Joe. “I want the surgery,” she says, “I don’t want to wait.” Joe turns to the physician, “Is this a very bad case?” The physician nods, “Yes, this looks pretty bad.” “Do you think surgery is the right choice?” Joe asks. The physician hesitates. “I can’t tell you what I think is the right choice for you. You’re the ones who will have to live with the outcome, not me. They’re both options.” Joe and Melinda exchange looks. “Why don’t you call the surgeon,” Joe says. Melinda nods and the perinatologist leaves. About 20 minutes later, the perinatologist returns. “I got through to him,” he says. Melinda is dressed and they’re both sitting in the examination room, waiting to hear what to do next. “I can send your files and he’ll review them. His name is Dr. Marc Martinez.” The perinatologist hands them a piece of paper with a name and phone number. They don’t recognize the area code. “He’s been doing this for a few years now. It’s an in utero process. He’ll go in with scopes and tools and actually laser the vessels in the placenta. You’ll want to start thinking of travel plans. You may want to start making phone calls. You don’t have any children, do you?” Melinda’s face is expressionless, “Just these” she replies, placing her hand on her belly. “That’s good. At least you won’t have to worry about childcare. Anyhow, you’ll want to find somebody to take care of your house.
22
Chapter 1
Usually people are away for three or four days, but it’s best to prepare for the unexpected. If you have complications, you may need to stay longer. You know, all those things. Reserve your tickets and I’ll start making phone calls on this end for your insurance.” Pointing to the piece of paper, the perinatologist continues, “He wants you to call him. He can discuss your case with you. After you talk to him, you can decide if you want to go through with the surgery. If you do, please let me know. If you don’t, let me know anyway, because we’ll have to find a different option for you.” The perinatologist leaves them and returns to his duties. Melinda and Joe head home. Once home, they call the number that their perinatologist gave them. It’s a pager. They enter their phone number, aware that it’s quite late and the physician will likely return the page in the morning. They hang up and wander around the house, careful not to enter the not yet completed nursery. Five minutes later the phone rings. Melinda answers the phone. “Hello, this is Dr. Martinez, I received a page.” Melinda introduces herself and Joe picks up an extension. Martinez is somewhat familiar with their case following his discussion with their perinatologist and they discuss her pregnancy, the fetuses, and survival rates. They discuss the potential that one might bleed into the other. Like their perinatologist, Dr. Martinez is concerned. He explains that the perinatologist has mailed her ultrasounds and medical records overnight. He will know more the next morning once he has a chance to review the materials. He promises to call them after reviewing their case in detail, and in the meantime faxes them information on the condition and his surgical approach. The next morning Melinda and Joe both call in sick to work and wait for Dr. Martinez’s phone call. The phone rings and Joe answers, he waves wildly at Melinda to pick up the other extension. After exchanging some pleasantries, Martinez explains, “I’m sorry, but this is a bad case. You should be aware of it.” Joe and Melinda continue listening. He explains their case in detail and answers their questions. After hearing his explanations they both agree that they want the laser surgery. There’s a pause on the other end and Martinez says, “Okay, we can do that. But there’s one other thing to keep in mind,” he explains, “It will take you a few days to get here. We can certainly schedule surgery and I’ll have my office
Fetoscopy as Lived Experience
23
work on insurance. But one thing you may want to consider, if you get here and one fetus is in terrible, terrible shape, which frankly, one fetus isn’t looking good right now, you may want to consider ligating.” There’s silence on the other end of the phone. Melinda asks, “What do you mean ligating?” “Well, there are two things that I can do—fetoscopically—for you. The first is what we certainly prefer, to laser the vessels. That’s what your physician explained to you.” “Yes.” “The other is to ligate—to tie off the umbilical cord to the fetus that’s about to die in an effort to give the other the full placenta. And also, to potentially protect it from the other fetus bleeding into it.” Melinda and Joe are completely silent. They hadn’t anticipated ligation. They hadn’t even heard of it. “Well,” says Joe, “what about the laser?” “Oh yes,” says Martinez, “That would certainly be the first and preferable method, but it will depend on when you get here and what shape the fetuses are in at that point. We’ll have to monitor the pregnancy and see what the options are once you’re here. But right now, based on what I see, yes, laser is certainly an option.” Melinda and Joe thank him for his time and tell him that they’ll call him back. They hang up the phone and tears begin to flow. Melinda is terrified, as is Joe. They go through the statistics. They think about their options and decide that they want the laser surgery. They call back Dr. Martinez and inform him. He tells them that it is Tuesday and he will try to schedule them for surgery on Thursday or Friday. That should give them time to get to town and go through preadmission testing at the hospital. It should also give them time to check on their insurance. Melinda begins calling airlines. She’s searching for the lowest rate possible, but doesn’t have the time to call every carrier. After contacting the third one she gives up worrying about the price differences and reserves their tickets. They’re slightly more than the first two airlines, but she is tired of explaining her situation to strangers and doesn’t have the energy to call one back and enter another phone tree. Together, Melinda and Joe call their parents and explain their situation. Not long after speaking with their parents, news of their condition
24
Chapter 1
begins to reach other family members. Each time Melinda hangs up, it seems that another family member is calling to find out what happened. Word is quickly getting out that the pregnancy is in trouble and that Melinda and Joe will be traveling. Each time the phone hits the receiver, it begins ringing again. It’s a brother; it’s a sister; it’s a parent; it’s an in-law. Between phone calls from confused and concerned family, the insurance agent contacts Melinda. She is uncertain as to Melinda’s condition: what is it, who is the patient, and how was it diagnosed? The agent does not know if the surgery will be covered, but she will check into it. When do they plan on leaving? No, her insurance will not cover airline tickets. Melinda hangs up and her sister calls. Two hours later, and following a stream of questions from her sister, the insurance agent calls back wanting more paperwork from the physician. Melinda asks, “Who?” The agent keeps repeating that she needs a letter from Melinda’s doctor. The conversation continues in circles and Melinda grows weary, “Well, is that the physician that I saw yesterday morning? Yesterday afternoon? Or the physician that I talked to a few hours ago?” The insurance agent, also annoyed, again asks, “Which one is your physician?” Melinda stops, thinks for a moment and says, “I don’t know.” She gives the agent Dr. Martinez’s office and pager numbers before hanging up. The phone rings again. And so it continues as they frantically put flights together and arrange for people to visit their house, pick up their mail, water their plants. All while hoping that the insurance company will cover the surgery. The next day, they arrive in the city in which Dr. Martinez is located. It was a long day and they didn’t sleep much the night before. Once in town, they page the doctor to inform him that they’ve arrived at the hotel which, thankfully, offers reduced rates to people traveling for fetal surgery. Dr Martinez explains that he’s at Holy Names Hospital and that they should come directly there for their ultrasound. They arrive for their appointment and are directed back to an ultrasound room. Another damn machine. Melinda looks at it and turns away. At this point, she’s used to laying on the table, pulling up her shirt and pushing down her trousers. The ultrasound technician walks in,
Fetoscopy as Lived Experience
25
introduces herself, and says that she works with Dr. Martinez. He’s on his way but she’ll start the exam. Just as before, she turns on the machine and begins taking measurements. She asks them about their flight and family. She continues taking measurements. When the door opens, a middle-aged, medium-build man wearing blue surgical scrubs and a pager walks through the door. He extends his hand, “Hello, I’m Dr. Martinez. You must be Melinda. You must be Joe.” They shake his hand. At least his is a familiar voice, as they had spoken with him so many times. He indicates to the ultrasound technician that he’ll take over the exam. He stares at the screen, moving the transducer from one side of her abdomen to the other. He takes measurements. He shows them the fetuses, their sizes, and conditions. He turns to them as he puts the transducer down. “Well, it’s a serious case as you know.” They both nod. “I think you should think about ligation, but I think laser surgery is also an option at this point.” Melinda and Joe look at each other. “We want the laser surgery,” Melinda says. Dr. Martinez nods. “Then we should do it as soon as possible.” He informs them that they should come back the next day and go through preadmission testing. At that point, they’ll meet his assisting nurse, Kay Brown. Also by that time, they should hear from the insurance agent as to whether or not the surgery will be covered. He asks them if they’ve thought about what they might do if the surgery isn’t covered. Joe nods his head, “Yes,” he says, “we have a new house. We might be able to refinance or take a second mortgage. I called our loan officer yesterday, she’s looking into the options.” The doctor nods, a look of angst crosses his face. This isn’t the first time he’s heard such a reply. “Horrible,” he mutters, “We’ll try what we can with the insurance agent. I’ll talk to them, sometimes that helps.” Melinda thanks him and they leave for the hotel. At 9:00 am the next morning, Melinda and Joe arrive at the hospital to undergo preadmission testing. A nurse takes them back into a small room where she begins to take different measurements on Melinda. Again, like everyone else, she asks, “Is this your first pregnancy? Where are you from? What do you do?” She’s very pleasant, but Melinda is tired of answering the questions. Halfway through the exam, the door
26
Chapter 1
opens and a woman walks through. She’s tall, older, and wearing blue scrubs. “Hi there,” she says, extending her hand. “I’m Kay Brown. I work with Dr. Martinez. You must be Melinda.” She walks over and shakes Melinda’s hand. It’s obvious that Melinda’s scared. “It’s okay,” says Kay as she puts her arm around her newest patient, “it’s all right to be scared. This should be the most exciting time of your life. You shouldn’t have to be facing this.” Melinda nods in agreement and begins to cry. Kay grabs some tissues on the nurse’s desk and hands them to her, as she gives Melinda a hug. She turns to Joe, “You must be Joe.” He nods. “How are you doing with this?” She asks, “Do you have any questions about the surgery? Can I tell either of you anything more?” Melinda says no as she wipes her face and blows her nose. She thinks she understands, but Kay explains the surgery anyway. She explains that they’ll go in with the laser, identify what they think are the vessels, and laser them in an effort to abate the condition. She hands Melinda a packet of patient materials including explanations of the surgery, informed consents, and information on the hospital and surgery program. As a seasoned fetoscopy nurse, Kay has a very calming way with Melinda and Joe, and they seem a bit more relaxed now that she’s there. They begin to ask about other patients. Have other people been scared? How long have other people had to make their decisions? Kay acknowledges that most people make their decisions quickly. The issue is trying to catch the condition before it gets too bad, “Before we lose the fetuses,” she says. “We don’t like losing babies.” They agree. “Do you want to talk to one of our chaplains or a social worker?” Kay asks. “We’ve got some great chaplains here. Our social workers are very nice, too.” Melinda and Joe indicate that they would rather not talk to anyone else. At least not a chaplain or a social worker. Kay says, “Okay, but just know they’re here, and they’ll be happy to talk to you if you want to talk to them. Have you met Deb?” she asks. Joe looks at her. “Who’s that?” “She’s a social scientist working on her Ph.D. She’s been here for most of the year. She’s studying how this works and who we are, you know,
Fetoscopy as Lived Experience
27
kind of anthropologically.” Kay laughs a bit as she waves her hand aimlessly through the air alluding to the variety of questions and activities that have become associated with Deb’s project. “No, we haven’t met her,” Joe replies. “I’ll introduce you,” Kay says. “Do you have any other questions for me?” “No, no other questions.” “All right,” says Kay, “I’ll leave you to finish here, then I’ll see you tomorrow. When you come in for surgery, you’ll come back to this same desk. And if you have any questions at that point, we can answer them then.” “Okay,” replies Melinda. “In the meantime, you take that packet back to the hotel, look it over very carefully, and if you have any questions—any questions at all— either page me this afternoon or write them down and bring them with you.” She hands them her pager number. “Okay,” they agree, and Kay leaves. A short while later, Kay returns with another woman. This woman is younger, maybe in her late twenties, and not wearing scrubs. “This is Deb,” Kay says, “Deb, this is Melinda and Joe. I told them a little bit about you, but why don’t you explain it. In the meantime, I’ll see you two tomorrow.” Kay leaves and Deb introduces herself and her project. She explains that she’s working on an interdisciplinary degree in social science. She interviews patients and their companions, and sometimes observes surgery. She also interviews physicians, social workers—anyone who has a hand in building fetoscopy experiences. She gives them her own packet of information explaining that she would like to interview them about their experience and if they’re willing, to observe Melinda’s surgery. Deb asks them to think about it, and not to feel pressure to consent or not to consent to being involved in her project. She explains that her study is separate from the fetoscopy surgery and that regardless of their choice, she wishes them well. After asking if they have any questions about her work she leaves them for some time to discuss it privately. When she returns, Melinda and Joe sign their consents and both seem intrigued by the prospect of being interviewed and sharing their story.
28
Chapter 1
Melinda smiles and explains that she’s very willing to be interviewed, especially if she can complain about insurance issues. She still does not know if her surgery will be covered. Deb thanks them and tells them that she’ll be there the next morning. Morning arrives and Melinda and Joe return to the hospital. Kay and Deb meet them in a back room to discuss Melinda’s surgery. Deb leaves and Kay continues to sit with them, making certain that they have all their medical questions answered. When they’re called into the preoperative area, Melinda leaves and Joe stays behind. Melinda is instructed to put on a surgical gown. It is flimsy and she’s not certain which is the front and which is the back. After adjusting it in different ways in hopes of trying to cover most of her body, she makes her way to the gurney that’s been set aside for her. She lays down on the gurney and soon preoperative nurses surround her, asking her a variety of medical questions and then asking them again. Joe is called to the back room and stands at the side of the gurney. One by one, people from the fetoscopy team come back to meet Melinda. They ask her the same set of questions, and she answers them. A little while later, another woman in scrubs comes to meet Melinda. She introduces herself as the nurse anesthetist who will be taking care of her. She has a pleasant face, is middle-aged, and has a distinct accent that Melinda cannot place. She speaks in soothing, almost motherly tones. “Don’t worry, honey, I’m the one who’s going to take care of you,” says the nurse. “I’ll be right there through the whole thing from when you go to sleep to when you wake up, I’ll be right there. Have you ever had general anesthesia before?” she asks. Melinda says no and confides that she still has her tonsils. She had her wisdom teeth pulled, but they used Novocain. “Well, do you have any concerns about anesthesia?” the nurse asks Melinda. Melinda replies, “Well, yes, I’m scared. I’ve never had it. I will wake up, right?” The nurse smiles. As she begins to reassure Melinda, Joe speaks up. “What about this thing about people feeling pain during surgery? I saw it on the news a few months ago. Will she feel anything?”
Fetoscopy as Lived Experience
29
The anesthetist shakes her head and makes a face of disgust. “They just scare people. It’s awful,” she says. “Well,” says Joe, “it scares me.” The nurse anesthetist nods. “Those are very rare cases. But, in fact, yes it does happen that people have bad experiences and some people do die or suffer effects from anesthesia, or surgery in general. But like I said, that’s a very rare situation. The chances of it happening to you are very small. I’ve never had anyone tell me that they’ve felt or remembered anything. But there are risks with surgery—to both you and the babies. You need to remember that. There are risks, here.” They continue talking and discussing the risks of surgery and anesthesia. Melinda thanks her for taking her concerns seriously and tells her that she doesn’t have any more questions. After asking her the same questions that everyone else has asked, the anesthetist rubs Melinda’s arm, grins widely and says, “Well, I’ll see you in surgery.” She shakes Joe’s hand and leaves. Throughout the morning, people come back to see Melinda. Kay comes to make certain that Melinda is comfortable. Dr. Martinez comes and makes certain that the informed consents are filed and to answer any lingering questions about the procedure, their goals, and its risks. Later in the morning, Deb appears around the corner of the screen. She looks different now that she’s wearing blue scrubs and seems to look more like the medical team than the person they met the day before. Deb walks up and touches Melinda’s arm. A faint smile is all she can offer and a soft, “hi, Melinda.” Melinda smiles a bit, “Look at you,” she quips. Everybody looks the same in the blue scrubs, almost like a uniform. “Yes, very stylish, don’t you think?” Deb replies. “Well it’s more than they gave me,” says Melinda, looking down at her surgical gown. Deb nods in agreement while continuing, “I just wanted to check in and wish you well and ask if there’s anything that I can do for you.” Melinda replies, “No, no. There’s nothing. I’m just waiting to be taken back.” Deb turns to Joe who shrugs and nervously laughs, “Pray?” His pained eyes betray his forced laugh.
30
Chapter 1
“Pray?” Deb asks, a bit surprised, but moved by the honest request. She responds quietly, “Okay, I can do that.” They both look at her as she continues, “I can, if it would help. If you want me to, I will.” They both look at her and kind of nod. “It can’t hurt,” Melinda says as she quietly rocks Joe’s hand in her own. “No, I imagine not,” Deb replies, “after all, I’ll just be there with a notebook, taking notes. I don’t handle any tools. I can do that much for you.” Joe seems relieved. Melinda seems less concerned, but thanks Deb just the same. “Okay, is there anything you would like me to say in particular?” Deb asks, not knowing their religion or spirituality. “No, I don’t think so . . .” Melinda responds while turning to Joe, “I don’t know any prayers, really.” Joe nods in agreement, then adds, “Just ask God for help.” “Okay. I’ll just say a quick something right before they start, how about that?” They both thank her and she leaves. More people continue visiting with her, asking if there’s anything they can do to help her. Finally, Kay shows again. She asks Melinda how she’s doing. They’re nearly ready in surgery. Melinda says she’s okay, but then looks off in the distance. Leaning down toward the gurney Kay gently asks her, “What’s the matter? What is it? Is there anything that we can do?” “It’s just,” she says beginning to choke up, “It’s just, I mean, I’m going to go to sleep and when I wake up, my babies might be dead.” Joe’s head drops, while tears begin to roll down Melinda’s face. Turning away, Joe silently wipes his eyes. Reaching through dangling wires and flashing monitors, Kay gives her a hug explaining, “We’ll do everything we can to make certain that doesn’t happen,” then she pauses and continues, “but it might.” Melinda nods, “I know.” At that point, the nurse anesthetist arrives, indicating that they’re ready in surgery. “Are you ready?” asks Kay. “Yes” says Melinda. Joe nods as well. He kisses his wife; they take her away. Melinda watches the ceiling whirl by as they wheel her to the operating room. Fluorescent lights pass in a dizzying effect. Then, as suddenly
Fetoscopy as Lived Experience
31
as it started, the gurney begins to slow. She knows she is coming nearer the operating room. She begins to see people, their faces are obscured by surgical caps and masks, but at least some of the eyes seem somewhat familiar. “Remember me?” asks one set of eyes, “I’m Christine, I did your ultrasound yesterday. I’ll be doing it today, too,” she says as she reaches out to touch Melinda’s arm. The gurney makes a tight turn and Melinda is in the operating room. At this point she wonders how far she’s gone and where Joe might be. They transfer her onto the surgical bed. There, she sees the nurse anesthetist who begins to brush Melinda’s hair away from her forehead. “Hi there, sweetie pie,” she says, “everything’s going to be fine. I’m just going to get some medications going.” The nurse anesthetist nods to Kay who heads out into the hallway, asking if anyone has seen Dr. Martinez. He’s standing in the hall, discussing the case with some of the nurses. He’s outlining his approach by doodling on empty supply cartons. “We’re ready,” she says. “Good.” He walks into the surgery and stands beside Melinda. “How are you?” he asks. “Fine,” she says. He rubs her shoulder closest to him and begins to hum. “You’ve met everyone?” he asks. “Yes, I think so.” “Good. Well, if you’re ready, we’ll go ahead and put you to sleep. Then we’ll start surgery.” Melinda says that she’s ready and Dr. Martinez continues to stand there, rubbing her shoulder and humming a song that Melinda vaguely recognizes. The nurse anesthetist slowly begins to put medications into the IV and Melinda drifts off to sleep. The doctor returns to the hall. He begins the process of scrubbing, as do the nurses, the ultrasound technician, and his assisting physician. Meanwhile, the nurses left in the operating room begin to remove the sheets that cover Melinda. They clean her abdomen and drape her with blue surgical cloths. Once she is ready, Dr. Martinez and the rest of the team enter the room. To one side of Melinda’s body stands the doctor and a nurse who
32
Chapter 1
will hand him tools. On the other side is an assisting physician, one of the doctor’s partners, and the technician who will run the ultrasound throughout the surgery. Also in the room is a nurse running “the tower,” a complicated, mass of machines through which she can switch between fetoscopy video and ultrasound images. Others in the room include Deb, who’s standing in the back corner, another nurse who will work the laser machine, and a final nurse, the circulator, Kay, who will troubleshoot the case if anyone needs help. The room is small and compact, but not uncomfortably tight. Surgery begins. Dr. Martinez has the lights dimmed. The only lights remaining are those emanating off the machines and handheld flashlights. He makes a small incision in Melinda’s abdomen and pushes in the trocar, a small funnel-like instrument. He does this through ultrasound guidance, careful not to rupture any amniotic membranes. Watching for bleeding, he then inserts the tools, through the trocar. Once the scope is inside, he looks around and sees the placenta. He slowly begins the process of identifying the different parts of the placenta, trying to see which vessels he will need to separate. After identifying them, he asks the nurse operating the laser to start the machine. He inserts the laser and gently applies energy to the vessels, theoretically separating the blood flows. Once he has lasered the placenta in the areas that he thinks are necessary, and the assisting physician agrees that they have accomplished their goal, they begin to remove the tools from the uterus. At that point, a fetal hand is cast into view. A nurse cries out, “Oh that one! Take that shot! Take that picture for the parents!” The doctor complies and dutifully pushes the button on the camera to take a still photo of a fetal hand. “Okay,” he says, “we’re outta here on three. One—two—three.” On the third count, he swiftly removes the trocar and watches for bleeding on the ultrasound. There doesn’t appear to be any. The trocar came out just as swiftly as it went in. The membranes seem to seal behind it. It was a successful case, technically. “What was the time?” the doctor asks as he steps away from the gurney and Melinda. “Two hours and twenty minutes,” replies one of the nurses as she continues to take down information on her clipboard.
Fetoscopy as Lived Experience
33
“Good, good . . .” he responds as he begins to remove his surgical gloves. He leaves to find Joe and explain the case. When he enters the waiting room, the nervous father immediately stands. He tries in vain to read the doctor’s face, but it offers little insight. As the doctor walks to Joe, he extends his hand and says, “Well, mom’s okay and the babies are okay.” Joe sighs, shakes his hand, and a smile begins to appear. The doctor motions toward two empty chairs and they sit. He explains the case in detail and Joe nods his understandings. “But,” he continues, “You need to remember that your babies are very sick. I’ve done what I can— but you’re not out of the woods. We’ll have to watch the pregnancy and see how the babies respond, okay?” Joe replies, “Okay, I understand. Cautious optimism, huh?” Dr. Martinez laughs and begins to stand. In response, Joe stands. “Yes, cautious optimism” the doctor repeats as he shakes Joe’s hand and pats his shoulder. “Recovery will call you when she wakes up. I’m going to check on her now.” He leaves and Joe sits down. Back in the operating room, the remaining nurses remove Melinda’s drape and wash her abdomen and put Band-Aids over the insertion points. The nurse anesthetist slowly begins to rouse Melinda. Rubbing her cheeks, she repeats, “Wake up, honey. Wake up. Surgery’s over. The babies are fine. Wake up, wake up.” Melinda begins to awaken as a transport gurney arrives. Kay, the nurse anesthetist, and the recovery room nurse wheel Melinda down the hallway as she lays back, groggily watching the same fluorescent lights that she had seen only hours before. Her throat is sore from being intubated, but she closes her eyes when she hears that everything is fine. She feels nauseous. Very nauseous. A recovery room nurse straps a fetal monitor on Melinda and verifies that there are two fetal heartbeats, but one is weak. Kay comes around to Melinda’s side, rubs her shoulder and tells her that her surgery’s over, repeating the same words that the nurse anesthetist did. “We’ve got two heartbeats,” she whispers, “you rest, soon we’ll bring back Joe.” “Sick . . .” Melinda whispers. “You feel sick?” Kay responds, lowering her face so that it’s inches away from Melinda’s half-opened eyes.
34
Chapter 1
“Throw up . . .” Melinda continues to choke out mumbled warnings that she may vomit. Kay steps away to let the nurse anesthetist talk to Melinda. “Hi, sweetie,” she says, as she gently caresses Melinda’s pale and slightly contorted face. After years of rousing patients, she finds that nothing is more soothing than human touch. She continues to softly push Melinda’s hair back. Melinda is clearly suffering the effects of the drugs used to control her ensuing contractions. She had been warned that contractions might follow the surgery but that they were generally easily combated with proper medication. But this medication—this was too much. Melinda was not prepared. “. . . going to be . . . sick . . .” Melinda repeats. “It’s okay. You’re okay. These are the drugs to help you keep the babies. We’ll take you off of them as soon as it’s safe.” “Throw up . . .” she repeats. Kay hands the nurse anesthetist a pan, should Melinda begin vomiting. The nurse anesthetist continues to soothe Melinda by promising her that she’ll take care of her. “It’s okay, there’s nothing there to vomit. You may have dry heaves, but you won’t choke. I won’t let that happen to you. You’ll feel like you have the flu until we can get you off these drugs, okay? Try and get through it, sweetie. I know it’s awful.” The nurse anesthetist continues stroking Melinda’s hair while Kay begins to rub her lower legs—anything to assure her that she’s not alone. Melinda closes her eyes. She has never felt this sick. The nurses fade to the background as Melinda concentrates on her babies. She groggily vacillates between fearing for her babies’ health and her own. Dr. Martinez returns to Melinda. She still feels sick, but is aware of her surroundings. She nods and mumbles responses. Like the nurse anesthetist and Kay, he assures her that there are two heartbeats, for the moment. He describes the surgery and explains that he’s still worried because the fetuses are in bad shape. Joe knows that she’s in recovery and when she awakens more, he’ll be brought back. After that, they’ll take her to labor and delivery and continue to control the contractions. Melinda whispers a thank you and the doctor soothingly rubs her arm. Unable to accept the thanks of a desperate mother he
Fetoscopy as Lived Experience
35
simply smiles his acknowledgment and responds, “I’ll check on you later.” He leaves. Eventually, Joe arrives and he and Melinda are transferred to labor and delivery. All night long, Melinda is given drugs to keep her contractions under control. She’s absolutely miserable and terribly thirsty. Joe sits back in a recliner and worries. Occasionally he wipes the hair from her face and runs an ice cube over her lips. His thoughts flash back to his grandmother’s battle with cancer and ineffective chemotherapy. The nurses check on her and Dr. Martinez returns quite late at night to check on her as well. The following morning her contractions have subsided and they take her off of the drugs. She is transferred to high-risk obstetrics where she finally stomachs some food. Kay returns to check in on her. This is the third time they’ve seen her since the surgery. “Don’t you have other patients?” Melinda jokes as the presence of Kay is consoling. Joe also finds comfort in her visits. “Oh yes, that.” Smiles Kay. “Of course, but I like to take extra special care of my extra special babies.” She checks Melinda’s vital signs and sits beside the bed, where the three of them discuss the surgery and their hopes for the future. After a half an hour of visiting Kay admits that she has to get back to work before she is missed. She leaves but promises to return before her shift is over. After Kay’s visit, Melinda continues lying in bed. An hour later, Dr. Martinez arrives to run a “bedside” sonogram. The sonogram is wheeled into the room and he watches the pregnancy. He shakes his head a bit and gives them the bad news. Unfortunately, it doesn’t look like the surgery helped much. The one is still in bad shape and doesn’t seem to be getting better. The other is holding his own. He tells them that he’ll continue to watch them throughout the day and look for possible signs of change. He lists the different signs that the pregnancy is improving and assures Melinda that they’ll watch for them. Melinda and Joe wait. Throughout the day, sonograms are ordered and they watch. The following morning, they run another sonogram. The doctor tells them that one fetus is quite ill and likely will not survive. They should
36
Chapter 1
consider ligating. He speaks with Joe and Melinda about the procedure and leaves them to decide. It’s a long morning. Melinda immediately wants to ligate. Joe is hesitant. He can’t understand her reaction and asks her how it is that she could kill their baby? Why would she want to kill him after all that they’ve been through? Melinda looks at him and explains that she’s not killing a baby, she’s saving a baby. They continue to debate, knowing that time is ticking away. If they want to ligate, they’re going to have to decide soon. Neither one of them is happy with the choices offered and the prospect of making a decision is very, very painful. It’s clear that they can’t agree. “If we ligate,” Joe asks “What then? What are we supposed to tell his brother when he gets older? How are we supposed to tell him what we did?” Melinda shakes her head. “It’s not that we’ve done something. It’s that we can’t do anything else.” Joe looks down. “How do you think he’ll react to that? Knowing that Mom and Dad, you know, tied off his brother?” Melinda looks down at her stomach. “I think it depends on how we tell him. Maybe it depends on if we tell him.” Joe looks at her. “What do you mean, if we tell him?” “Well, maybe we’re not supposed to have twins? I mean we only planned on one, and maybe I’m only supposed to have one?” Melinda looks at Joe, she’s confused and straining to make sense of the situation. Joe shakes his head. “You mean, he’d be the only person in the family not to know that he had a brother?” Joe sighs and shakes his head, “No, we can’t do that.” Melinda continues, “I’m not worried about him blaming us, I guess. I’m more worried that . . .” she stops in mid-sentence, staring out the window. “What?” asks Joe. “What’s worse than blaming us?” “I’m worried that he’ll blame himself.” “What?” he asks. “I’m just worried that he’ll think that he stole his brother’s blood, his food, his air . . . that he killed his brother. I couldn’t bear that. I’d rather he think that we killed his brother than he did.”
Fetoscopy as Lived Experience
37
Joe shakes his head. “I don’t want anybody to kill anybody. I just want my babies.” Melinda begins to cry. “Don’t you think that’s what I want, too?” They continue to discuss what death means, what killing means, when life begins, when life doesn’t begin, how life should end, how life has to end. For hours, they talk, cry, and debate. They ask to see the chaplain and they ask to see social workers. They debate calling their parents and decide not to call. The decision’s too hard for them, let alone their parents. Later that afternoon, Joe and Melinda decide to ligate. Comparing their decision to turning off life support to a dying family member, they tell Dr. Martinez that they want the ligation as soon as possible. The doctor explains that they’ll have to convene an ethics committee meeting in which he’ll explain the case. He assures them that this is nothing new. All ligation cases must be reviewed before the committee, but he feels this is a clear-cut case and ligation is medically warranted. Nevertheless, there is always the potential that the committee may reject it. They’ll know the next morning. The following day the ethics committee meets and Dr. Martinez explains the case to a small group gathered around a table. He answers their questions and by the end of the meeting, they are in agreement. Ligation is warranted. He goes upstairs to tell Melinda and Joe that their case was accepted. It passed. They can do the ligation, if they still want it. Joe and Melinda agree that yes, they still want it, but Melinda is a bit hesitant. “What’s going to happen?” she asks. The doctor looks at her. “Well, we’ll take you back to surgery just like before—” he begins to explain the surgery. “No,” she says, “what’s going to happen to my baby? What’s going to happen to the dead baby?” He explains that without blood and nutrition, it will begin to emaciate. It won’t hurt the surviving baby, but it will remain inside. Melinda looks panicked and somewhat horrified. “You mean the dead baby’s going to be with the living baby for the rest of the pregnancy?” “Yes.” “Inside me?”
38
Chapter 1
“Yes, it will remain in utero.” “And when I give birth? What then?” Melinda asks, her eyes widening. “You’ll give birth to both,” Dr. Martinez says. “And what do I do with the dead baby?” She asks. “Well,” he explains, “you can cremate it, you can bury it. You can do any number of things. You can see it. You don’t have to see it. You’ll want to work that out with the department of social services at your delivery hospital.” Melinda agrees. As she signs the papers consenting to ligation she mumbles, “I’ll be a walking graveyard.” Joe reaches for his wife and the doctor stands silently. Later that afternoon she is taken back to surgery and the same processes ensue, only this time she knows that she’ll go in with two heartbeats and leave with one. She’s wheeled down the corridor and the fluorescent lights pass by. She’s taken in and as before, the lights are dimmed and surgery begins. This time, however, the placenta isn’t the object that the doctor searches for, but the umbilical cord leading to the dying fetus. With miniaturized sutures, he ties it off and everybody in the room waits to make certain that the blood flow ceases. A few minutes pass. It is dead. At the end of the surgery, Dr. Martinez again counts to three and removes his scopes and trocar, announcing “We’re outta here.” He steps away from the table and tells the rest of the team that he’s going to talk to Joe. The nurse anesthetist begins to rouse Melinda. Like before, she rubs her face and her shoulders. She removes the intubation and careful not to mention the babies, she gently whispers, “Wake up, sweetie pie. Wake up, honey. Melinda, case is over. Everything’s fine.” The following two days are similar to the first days when they arrived and underwent laser surgery. She’s taken to recovery and labor and delivery. Again, she suffers through the powerful drugs to control her contractions. Ultimately, she returns to the high-risk obstetrics floor to be monitored. Here they run ultrasound exams throughout the day to make certain that the surviving fetus remains a surviving fetus. The ultrasounds are painful to watch as Melinda sees her one live baby, and occasionally catches glimpses of the other. The dead baby doesn’t move. She finds
Fetoscopy as Lived Experience
39
watching the ultrasound too painful and can’t watch them any longer. She hopes within a few days or possibly weeks, to return to watching them, but it will take time. The next day, Dr. Martinez tells them that the case looks good, that the fetus looks fine. They can return home under the care of their other perinatologist, who will see them through the end of their pregnancy. They thank him for his efforts and he leaves the room. Throughout the day, nurses come in and offer condolences for the decisions they had to make, and best wishes for the future that lies ahead. Deb comes in and interviews them. They explain the pain of making their decisions. They explain their fears and hopes. Like other interviews, this one is at once painful and hopeful. The three of them sit around the room talking about the case and the decisions. They still don’t know what they may or may not tell their baby. They’re filled with many questions. They don’t know what they’ll do with their dead baby. They think they may cremate him and take his ashes home. But they also want to be able to “move on” as Melinda explains. Maybe she won’t take the ashes home. They’re not certain, but they have time to make that decision. They’ll probably talk to their parents. Deb wishes them the best for their pregnancy, and as with the nurses, offers her condolences for the son that they lost. They thank her. She asks when they’re leaving and they tell her later that night. They have a flight booked and are looking forward to going home and being in familiar surroundings. Later in the day, they are released from the hospital and many of the people who cared for them come by to say good-bye. They exchange emails with Kay and phone numbers. They promise that they’ll let her know when the baby arrives. After seven days, two surgeries, and the death of a son, they leave and head home. While home, they continue monitoring their pregnancy with multiple ultrasounds and visits to the perinatologist. As they prepare to make room for a new baby, they also prepare to make room for a dead baby. They speak with mortuaries and decide what they want done with their dead baby. They opt for cremation and will bring the ashes home. Hopefully, they’ll spread them somewhere, maybe by a tree, but not until they know where they’re going to eventually settle. They’re not convinced that
40
Chapter 1
they’re going to stay in this town forever and they don’t want to leave their dead baby behind. Friends say they sound morbid discussing these things, but they shrug. What else can they do? A month or so before her due date, Melinda goes into labor. She’s taken to a local hospital where she delivers both babies vaginally. One is pink and crying. He’s small, but very much alive. The other is smaller, still babylike, somewhat emaciated, and a deep purple. She holds both. She names both. One is taken to the nursery; the other to the morgue.
2 Why Fetoscopy? Why Now?: An Ethnography of a Medical Technology and the Emotions That Fuel It
Since the latter half of the twentieth century, and carrying into the twenty-first century, some physicians and research teams have sought prenatal treatments and diagnostics for a handful of potentially lethal fetal conditions in an effort to save an otherwise nonviable fetus. These surgeons and their patients live on the “new frontier” of reproductive medicine in which emergent technologies lie at the intersections of life and death, hope and despair (for criticism of “frontier” rhetoric, e.g., see Casper 1997). Fetoscopy is one of these procedures. A variety of subtle differences separate the ways in which fetoscopists use the procedure; therefore, fetoscopy is best considered a general term describing a number of similar procedures in which an endoscope is placed in utero, allowing physicians to view inside a pregnant woman’s uterus.1 Often the endoscope, or fetoscope, is combined with a sampling mechanism or miniature surgical tools to enable prenatal diagnoses and possible therapeutics (e.g., Quintero 2002a, Reece et al. 1997, Dearest, Lerut, and Vandenberghe 1997). As an informational gathering tool, and possible vehicle for fetal treatment, fetoscopy is a powerful medical procedure. However, compared to other forms of prenatal procedures such as ultrasound and amniocentesis, fetoscopy is quite rare and, not surprisingly, little-known in popular culture. It is the general lack of knowledge of fetoscopic procedures among potential patients, combined with its powerful potential uses, that makes a social analysis of fetoscopy timely. Although contemporary fetoscopy delivery is sparse and its use limited, for those who develop and undergo it, its effects are wide ranging and life altering. An analysis highlighting the experiences of those closest to it, the patients and their caregivers, is warranted.
42
Chapter 2
The path bringing fetoscopy to modern-day medicine has not been smooth. It is impossible to appreciate contemporary fetoscopy without understanding the potentials and limits of its predecessor, “classic fetoscopy” (Quintero, Puder, et al. 1993). Although classic fetoscopy first appeared in the 1970s, it was comparatively cumbersome and a relatively large tool led to increased pregnancy disruptions. Simply put, in many cases the medical risks of using classic fetoscopy outweighed the medical risks of not using it. Though some physicians remained hopeful that fetoscopy would eventually prove useful for a variety of diagnoses, in general the technique was replaced by the less invasive and improving ultrasound technologies (e.g., Hobbins 2002). Although ultrasound usurped fetoscopy as the premier visualizing technology for obstetricians and gynecologists, classic fetoscopy did not disappear from medical practice or development. A few conditions still needed the accuracy of a clear in utero, visual diagnosis. Fetoscopy did not vanish from medical practice, but it became a relatively obscure procedure offered by a limited number of physicians for only a handful of rare conditions. In his review of endoscopy in obstetrics, fetoscopy pioneer, John Hobbins, explains that fetoscopy has historically waxed and waned as other technologies developed. Less invasive technologies overtake fetoscopy (e.g., ultrasound), only to have fetoscopy reemerge as a procedure capable of treating or diagnosing other medical conditions. As the 1990s unfolded, some physicians realized that advances in endoscopic technologies in other areas of medicine (e.g., cardiac surgery) could be harnessed for new fetoscopic procedures. The combined advantages of high-resolution visualization technologies with miniaturized surgical tools and small diameter sampling needles laid the technological foundation and struck the medical imagination leading to this new fetoscopy. Now physicians could enter the womb with less risk of pregnancy disruption and see the fetus more clearly. The future of fetoscopy, once again, seemed assured. With time, use of fetoscopy emerged in two fashions: operative fetoscopy and diagnostic fetoscopy (sometimes termed, embryofetoscopy). Both approaches share the dual advantage of being medically minimally invasive while allowing physicians to view an in utero region.
Why Fetoscopy? Why Now?
43
They differ in the period during which access occurs (i.e., early or later in gestation), length of incision for the endoscope to enter the uterus, and the ability to alter or fix the underlying medical condition (e.g., Quintero 2002a). Although some laud the ability of fetoscopy to aid in the diagnosis or treatment of troubled pregnancies, others are apprehensive and feel that it can be misused, inviting people to “play God” by deciding who and what is fit to live. While some physicians and patients embrace the procedures for their life-saving attributes, they also carry potential physiological and psychological risk. Taken together, diagnostic and operative fetoscopy offer some women a chance to alter their pregnancies; at the same time, these medical procedures also place these women in difficult moral and cultural terrain as they must make difficult decisions regarding their pregnancies. Diagnostic embryofetoscopy is generally performed in the first trimester of pregnancy with physicians either using scopes only or adapted “needles” that hold tiny endoscopes. Diagnostic procedures allow physicians to diagnose visually conditions for which other prenatal techniques, including amniocentesis and ultrasound, are ill-equipped.2 These procedures are touted for their ability to view the in utero region, and they may also have the ability to draw samples from the womb (Reece et al. 1997). Though many medical questions remain unanswered, in theory early access to fetal circulation through diagnostic embryofetoscopy could lead to genetic therapy of the developing fetus. As E. Albert Reece, a leading expert in diagnostic embryofetoscopy, explains: Up until recently, our ability to attempt curative therapy for certain conditions and genetic disorders was precluded by our inability to access the fetus. Needle embryofetoscopy can now permit us access to the fetus very early in gestation at a time when the fetus is immunologically naïve, thus paving the way for firsttrimester interventions. (Reece 2002:21)
Currently, some forms of diagnostic (or needle) embryofetoscopy are used to sample blood from the embryo or fetus; it is not far-fetched to envision a similar procedure that might deliver medications or therapies to the human embryo or fetus. Although bioethicists and others disagree over the presumed appropriateness of such therapy, it is possible that advances in diagnostic embryofetoscopy may prove the catalyst and vehicle for future genetic therapy.
44
Chapter 2
A technological cousin to diagnostic embryofetoscopy, operative fetoscopy, is performed during midgestation using tiny abdominal incisions through which physicians pass endoscopes and other items necessary for surgery (e.g., Quintero 2002a).3 Once inside, physicians can see the fetus or placenta and attempt surgery to alleviate and minimize medical conditions. Unlike the highly invasive open surgical technique (popularized in the 1980s) in which a caesarian-like incision allows physicians to remove a fetus (or parts of it) from the womb for surgery, operative fetoscopy involves no long incision and no part of the fetus is removed from the womb.4 The fetus remains in utero throughout a procedure. Unlike a diagnostic approach, operative procedures are considerably longer, ranging from 2 to 3 hours, and may be performed under general or local anesthesia. Only a few conditions are amenable to operative fetoscopy; however, the list continues to grow, as does the number of medical centers offering it as treatment for high-risk pregnancies (for current uses of minimal access techniques and the technologies utilized during surgery see, e.g., Sydorak and Albanese 2003). A Word on Words Before further discussion of fetoscopy and its social and cultural effects, it is necessary to address the difficulties of writing about fetoscopy and fetal politics. All facets of an individual’s identity assume social roles and responsibilities shorn up with cultural narratives and political contexts. As illustrated within abortion debates, pregnancy invites, suggests, proves, and disproves a variety of prenatal definitions and assumptions. Reflecting philosophical variations and ideological differences, individuals use specific terms in an effort to press forward their personal beliefs regarding the meaning of the unborn. For example, a pro-life individual may refer to an in utero entity as “baby” quite early in gestation, whereas another individual may wait until significantly later or postbirth to use the term “baby.” Referring to the in utero as a baby is a philosophical, moral, and political decision granting special attention, and possibly rights, to the unborn. Referring to the in utero fetus in the same fashion that one refers to an already born baby leads to a slippery slope when
Why Fetoscopy? Why Now?
45
the rights accorded a born baby may also be given to the unborn as though the two entities were no different. Yet, the already born and unborn are quite different. The unborn is completely dependent on the body of the woman who carries it. The already born, while still dependent on others, does not rely on a particular host body. Many Western individuals and legal precedents would argue that the already born is a person with legal rights. It is less clear what, if any, rights the unborn should be accorded, particularly when its presumed rights may conflict with those of the woman who carries it. In their efforts to study reproductive experiences and present them in ways that do not lose focus on the pregnant woman for the more elusive fetal patient, most feminist scholars support the biomedical distinction between “fetus” and “baby” in their efforts to theorize pregnancy without threatening women’s reproductive rights. Recent arguments, however, have shown that such positions fail to address the diverse contexts of reproductive experiences (Morgan & Michaels 1999). I join these later contributions that critically explore fetal subjectivity within feminist politics and, like many of these scholars, as a pro-choice social scientist I am constrained by the “Feminist Problem of the Fetus,” which makes it difficult for scholars to examine the fetus as a subjective entity (e.g., something that may have cultural, human, or personal identity) without potentially supporting or entrenching arguments of fetal rights (Michaels 1999:113). The Feminist Problem of the Fetus is distinctive in that it not only affects individuals, but also entrenches social assumptions. As noted in the medical and social scientific literatures, when fetuses undergo medical treatment, there are two patients: the fetus and the woman who carries it. Many theorists who study pregnancy and its political manifestations in a Western context therefore identify a potential “maternal-fetal conflict” (e.g., Mattingly 1992; Hubbard 1982; Blizzard 2005b). The concept is simple, but its ramifications are complex. The maternal-fetal conflict arises from the fact that a fetus lies within a particular woman’s body. It relies on her for its continued development. However, while the fetus in some ways is separate from the woman, it is also connected and fully dependent on her. A conflict may arise when its needs (or some may argue its rights) run contrary to the woman’s
46
Chapter 2
needs or rights. If a woman selects to abort a fetus, for example, some may argue that the woman’s and fetus’ rights are in conflict. It is interesting to note the rhetoric of maternal-fetal conflict presupposes a distinctive, cultural relationship in existence: a mother and a fetus (or would-be baby). This potential maternal-fetal conflict—not the pregnant woman-fetus conflict—has taken on a rhetorical life of its own. Even when referred to as the maternal-fetal relationship, the rhetoric still implies that the woman carrying the fetus is primarily a mother. Not only does the maternal-fetal conflict or relationship promote the view of a pregnant woman as mother, but the relatively new medical specialty of “Maternal-Fetal Medicine” further entrenches it. Though an in utero entity may exist as either fetus or baby, it is the rare case that a pregnant woman in a Western medical context is not a maternal entity. The Fetus as Cultural Artifact Different cultures and time periods have sought to understand the complex processes of human reproduction. Depending on the time and location analyzed, any variety of explanations are offered to make sense of these visible and invisible bodily processes (e.g., gestation and conception). Numerous anthropologists, sociologists, and historians have demonstrated that different cultures have particular methods and stories to understand, explain, and perhaps control pregnancy and childbirth (e.g., Jordan 1992). Their beliefs are supported within a cultural system. Their beliefs about reproduction fit with their beliefs about how the world works. Their theories make sense within the context in which they are created (e.g., classic examples of historically and culturally situated processes of human biology include the validity of the homunculus and humoral theory). Contemporary Western cultures also have beliefs about pregnancy and reproduction. Some scholars, refer to this contemporary moment, as “Scientism.” Scientism involves a belief in the power and authority of science over other forms of knowledge. Although the intricacies of Scientism are intriguing, they lie outside the parameters of this book. This book, however, does examine the notion that fetoscopy and other forms of Western biomedical medicine make sense only because of the
Why Fetoscopy? Why Now?
47
cultural context in which they are embedded. Fetoscopy makes sense in, and is an outcome of, a scientistic context and must be examined with particular attention to the biases that such a cultural system contains. In this light, fetoscopy and the meanings associated with Western pregnancies are the outcome of cultural interactions. To understand fetoscopy is to understand those who live with it, describe it, and build it both socially and technologically. The patients in this work accepted a Western notion of safe hospital births and increased monitoring and intervention in troubled pregnancies (c.f., Davis-Floyd 1992). It is important to recognize that their experiences reflect a very specific, shared background and belief in medical science. They are fully entrenched in Western biomedicine. The cultural context of Western pregnancies is largely created through hopeful, positive myths of a joyously wanted healthy baby and the ability of medical science to assure a well-intentioned mother-to-be of a good pregnancy outcome. Indeed, for many parents-to-be, pregnancy is the happiest time of their life. In these cases, wanted fetuses develop in wellnurtured wombs as excited and anxious families build rooms in their hearts and homes for the new “little one.” Particularly in the United States, these stories and images create and perpetuate a belief that pregnancy is a relatively easy state to attain, and once attained, with proper medical care, observation, and in some cases intervention, will arrive at its fated conclusion: the birth of a healthy baby (e.g., Layne 2000). Unfortunately, for some parents-to-be this pregnancy story is far from reality. Some parents-to-be face dangerous medical conditions affecting both the woman and her developing fetus. Sadly, some pregnancies end in the birth of an ill, unwanted, or dead baby. As anthropologist Linda Layne demonstrates, understanding and accounting for the psychosocial and cultural affects of unwanted pregnancy loss are crucial in an examination of how women make sense of their pregnancy experiences (Layne 2003). A patient’s desire to avoid or minimize any of a variety of pregnancy losses is not only pertinent but paramount to the study of why and how fetoscopy develops. Fetoscopy is always offered and undertaken in a context framed by loss. In some cases, loss implies the death of a wanted fetus; in others it highlights the loss of the “perfect baby” and realization that an ill, disabled, or malformed fetus exists (e.g., Landsman 1998, 1999). Especially in Western
48
Chapter 2
contexts, pregnancy loss often invites feelings of maternal guilt and/or blame. In his work exploring reproductive catastrophe, psychiatrist Stephen Firestein demonstrates that the metaphor of pregnancy as production, child as product, and woman as laborer carries with it considerable implications for women who produce “defective products” in an era of high-technology, quality control, and assumptions of carefully monitored and altered gestation and birth experiences (e.g., Firestein 1989; see also, Landsman 1999; Layne 2003; Rothman 1989). Feinstein explains that “our family product in the present century tends to be our children— a source of pride and contentment or frustration, embarrassment, and disappointment” (Firestein 1989:38). Fair or not, the cultural assumption is that if something goes wrong with the pregnancy, it was a problem brought on by the mother: what did or didn’t she do to allow this to happen? It is within this tenuous and painful context of loss, blame, and guilt that some women attempt fetoscopy. While scholars search for appropriate terms to analyze pregnancy experiences and understand the ways in which loss is experienced, still others examine the iterative process of making a baby “real” (e.g., Layne 2003).5 Returning to his work examining reproductive catastrophe, Firestein reminds us that we all carry “private wishful images” in which we envision ourselves and our families (Firestein 1989:38). These images are personal, carefully crafted, and at times tragically antithetical to the reality of lived experience. As fetuses develop and become real to the women carrying them (e.g., a woman may feel fetal movement and view ultrasounds) and to those who surround her, many fetuses take on aspects of personhood: they are ascribed with qualities and characteristics that more readily track onto “baby” than “fetus.” As babies are created in utero, so too are parents or mothers. All pregnant women, and those who care for them, have wishful images. Fetoscopy patients may differ in the potential heightened emotions that come from making decisions to alter their pregnancies. Fetoscopic wishful images merge the wished for pregnancy before a tragic diagnosis and the hoped for outcome that follows surgery. While interacting with patients and medical workers, I often struggled to find ways to discuss what was occurring and to whom it occurred (for
Why Fetoscopy? Why Now?
49
similar concerns, e.g., Layne 1992). Each fetoscopy case brought new “patients,” “mothers,” “parents,” “fetuses,” and “babies.” The degrees to which anyone or anything was more or less a “mother” or “parent,” or “baby” or “fetus,” varied. As noted previously, in cases where women undergo reproductive procedures and testing on their fetuses, there are at least two patients: the woman through whose body the procedures are conducted and the fetus on “whose” body the procedures are conducted (e.g., Mattingly 1992; Rothman 1986; Casper 1998). Although the fetuses are always patients in fetal surgery, so too is the woman who carries it and seeks treatment for it. From this point on I use the term patient only to refer to the woman who consents to a medical procedure. While I do not want to minimize the fact that the fetus is also a patient, while investigating fetoscopy I found that the term patient used in the hospital generally referred to a woman who, on seeking medical assistance for a problem within her body, entered a patient role and from whom medical informed consent was required. To allow for the dual identity of an in utero entity existing as both fetus and baby, I use the hyphenated term fetus-baby to indicate it may be either fetus or baby, depending on the political context and social network surrounding it/him/her. Fetus-baby underscores that one perspective of the entity may be vastly different compared to another. I use fetus-baby only to refer to an in utero entity in theory or from my perspective as a researcher. If interviewees spoke of a baby or fetus, I use their term as it suggests larger assumptions and worldviews. Similar tensions and confusions exist in speaking or writing about a pregnant woman who selects to undergo fetoscopy. Depending on one’s perspective, she might be a patient and/or mother. As a patient, she consents to surgery on her otherwise healthy body in an effort to help her fetus-baby. As a mother, she lives within a cultural context that assumes certain behaviors toward her fetus-baby.6 Reflecting the dual identity of fetus-baby, I also use patient-mother to underscore the complimentary and the conflicting facets of multiple, fractured identities. In still other cases, I use patient-parent to refer to the patient-mother and also to include a partner who, like the patient-mother, often must determine what are and are not acceptable treatment options for the fetus-baby.
50
Chapter 2
The Project Examined: Ethnography and Methodology To investigate fetoscopy I developed research strategies, largely anthropological, to conduct an ethnography of fetoscopy. With ethnography an “outsider” moves to a foreign environment to study the ways in which other cultures live (e.g., Denzin and Lincoln 1994). Ethnographers combine observation and interview techniques with their lived experience to build a knowledge basis of intimate, personal encounters and formalized, professional interactions. The ethnographer comes to know the site and its inhabitants in ways that merge the personal and professional into a hybridized existence. In the later twentieth century, Western anthropologists and social scientists began using it reflexively, to understand our own cultures (e.g., Martin 1987). In recent years, social scientists, including medical sociologists and anthropologists, have entered U.S. medical clinics to understand the ways in which we create medical concepts and procedures in an effort to understand how patients and their medical caregivers create meaning within medical interactions and sociocultural experiences (e.g., Rapp 1999; Taylor 1998; Martin 1995). The data underlying this work lie in the stories of fetoscopy patientmothers, their companions, and medical providers between the years 1993 and 2005. To meet these people, I worked alongside determined medical providers and desperate patient-mothers hoping to alter, fix, and know better what ailments affected unborn fetuses. Although few clinics worldwide offer fetoscopy, its use is growing, and slowly more physicians and centers are offering it to their high-risk patients. It is difficult to estimate how many centers offer fetoscopy because its definitions and use vary (e.g., Blizzard 2000; Quintero 2002a); however, while I was on site at the hospital (1997–1998), the nurse who organized most of the program informed me that she believed there were anywhere from four to seven clinics in the United States that offered treatment for varying conditions and three to five clinics outside the country. Since that time, she believes the numbers have increased dramatically to approximately 10 clinics in the United States and 15 outside (as of spring 2005). When recently discussing these numbers, she also added that in 2005 it is even more difficult to identify how many clinics exist because so many physicians are attempting some form of endoscopic in utero procedures
Why Fetoscopy? Why Now?
51
(including fetoscopy) in a variety of clinical settings. Again, depending on how one defines fetoscopy, the numbers of surgeries and centers differ. All procedures reported in this book were performed by Dr. Marc Martinez, a perinatologist and leading fetoscopic surgeon, at one of two U.S. locations: City Hospital or Holy Names Hospital. City Hospital is a large, secular, medical school where Dr. Martinez practiced in the years before 1996. Holy Names Hospital is a small, Catholic women’s hospital, were Dr. Martinez worked since leaving City Hospital in 1996 until his recent departure in 2005 to a secular medical school, University Hospital. No interviews or observations were conducted at University Hospital or City Hospital; however, I did interview former patient-mothers from City Hospital. My ethnography led me to spend a year at Holy Names Hospital (1997–1998) to understand the development and implications of fetoscopy. Intriguingly, when I began this project, I had not anticipated working at a Catholic Hospital. As noted, Martinez left City Hospital in 1996. I contacted him about my project before this departure and asked if he would be willing to open up his work to my ethnographic analysis. We spoke over the phone and eventually met in person. After our meeting (at City Hospital), he agreed that he and his practices would be the subject of my study. I left City Hospital and returned to finish my graduate courses and after completing my courses and exams, I began preparing for my ethnography. I contacted City Hospital in my effort to let Martinez know that I was ready to commence research. At this point, I was informed of his move. I was shocked that he had gone to a Catholic setting (figuring fetal politics would be heightened) and that it was a community-based hospital. Nonetheless, he assured me that he still supported my work and was ready for my arrival. I went. Holy Names is an intriguing location for cutting-edge fetal research. It is not a large medical school (such as City Hospital or University Hospital) where students and faculty conduct daily research; rather, it is a small community-based hospital that is colorful, pleasantly decorated, and friendly, and except for complications to pregnancies and surgeries, its employees are generally not faced with life-and-death, traumatic situations. As a physical structure, it is not imposing and, for the most part, I was extremely comfortable in this environment as it allowed quick
52
Chapter 2
friendships and lessened a sense of dissociation or awkwardness I might have felt in a larger hospital. During my stay at Holy Names I had the opportunity to meet a variety of individuals and attend many medical events. Throughout the year, I observed 20 surgeries, interviewed 18 fetoscopy patient-mothers and 10 patient companions (generally a partner or “father” of the fetus-baby). While at the hospital, I followed fetoscopy workers in the hospital, to animal research protocols, and to professional conferences. I developed strong, personal relationships with members of the fetoscopy team. Though my interactions with patient-mothers were more limited, I also followed them through their procedures (sometimes attending follow-up ultrasounds), visited with them in their hospital rooms, and often joined their family members in the cafeteria for coffee and conversation.7 As an ethnographer, I joined patient-mothers, their companions, nurses, physicians, chaplains, and other professionals, forming the social web and cultural context in which fetoscopy was experienced, procedures constructed, and its meanings made. Patient-mother interviews typically lasted 30 minutes to one hour, were conducted in their hospital rooms, and took place 24 to 48 hours following surgery. During the interview I asked them to tell me about themselves and their experiences with fetoscopy. I listened to their stories, including how and when they chose to begin and end them. At the conclusion of the interviews, many of the patient-parents thanked me for my time and interest. During these final exchanges of thanks and wellwishes, many also expressed their concern over what they considered to be a general lack of knowledge by both medical and laypersons about their conditions and potential treatments. Many wished to be interviewed in the hope that more people would learn about their condition and should someone face a similar situation they might find my work, and the interviews that inform it, helpful. In some cases, if patient-mother consent was given, I accompanied the surgical team in the operating room to observe surgery. The cases were diverse, ranging from purely diagnostic assessments of the fetus to operations including shunting, biopsy, and ligation (tying off an umbilical cord) as well as surgery on placental tissues. While in surgery, I stood in the corner of the room (approximately 15 feet from the patient-mother’s
Why Fetoscopy? Why Now?
53
head), where I could watch the surgical field (the area where only those “scrubbed in” may enter) and the medical professionals working within and around it. I was allowed to take my fieldnotes into surgery, where I recorded events as they unfolded. Beyond patient-mothers and their companions, I interviewed 38 medically and nonmedically trained professionals including, but not limited to, nurses, physicians, ultrasound operators, chaplains, social service professionals, and animal researchers.8 Like the patient-mothers, I approached them with a description of the project and asked if they would be willing to be observed and interviewed. The response to my project was overwhelmingly positive, with most people consenting to interviews and observation, and assisting in locating others who could help me. Professional interviews generally lasted 30 minutes to an hour and were conducted over the phone, during breaks in personal offices, in the hospital library, and in empty patient rooms. During the year and a half following my ethnography at Holy Names, I interviewed 24 former patients who had fetoscopy at City Hospital or Holy Names before I began my ethnography in 1997. Because of patient confidentiality, I could not contact former patients directly. Instead, I gave the physician’s office assistant approximately 150 packets that contained my informed consent and short project description. The assistant sent the packets (including a letter of introduction from Dr. Martinez) to their former patients. Thirty-five consents were returned directly to me indicating that they wished to be interviewed (not all could be interviewed because information on their consents was incomplete, e.g., no phone number or other method for contacting them). Some packets were also returned to the medical office without a forwarding address and it is reasonable to assume that some were lost. If the office had incomplete information on a patient, a packet was not sent. Because of the complexities of mailing and translation, no packets were sent to international patients. In 2005 I again returned as a researcher to Holy Names. Although I left Holy Names in 1998, I kept in contact with those at the hospital and made return visits as a friend and watched their organization grow. Since my initial contact, it is clear that many changes have occurred and many things remain the same. Again I sought and gained research
54
Chapter 2
approvals and returned to my site to update my research. With the assistance of the research coordinator, we sent my informed consents to the patient-mothers who had undergone fetoscopy since I left in 1998. She sent out more than 500 packets to patients who underwent fetoscopy between my departure and spring 2005. From over 100 of those consents returned directly to me, 20 were sampled to complete this book and 13 were completed (again not all interviews could be conducted because of scheduling conflicts and a lack of contact information). Consents were sorted by time zone (according to the post mark), and I sampled blindly from each time zone to reflect the percentage of consents returned. As the project continues, I will interview the remaining women. However, the sampling system was created for the purposes of this book, to balance newer voices with the number of older voices. Within what may seem a homogenous group of patient-mothers (e.g., all selected to undergo fetoscopy by the same physician for a handful of rare in utero conditions), individuals’ stories and experiences show considerable variation in the meanings they attach to their procedures, pregnancies, views of motherhood, and assumptions governing appropriate, reasonable health care. It is important to note that the stories that inform this book are necessarily self-selected. For example, I interviewed only patient-mothers who chose to undergo fetoscopy and received treatment. To understand fetoscopy decision making better, it will be informative to cast a wider net and identify and interview women who chose not to undergo the procedure, just as it will be particularly useful to interview women who wanted the procedure, but could not afford it or were denied its use in the manner desired. These examinations have yet to be made. Although ethnographies are useful tools for understanding the ways in which medical interactions are constructed, shaped, and explained, the method has been criticized. Notably, ethnography was first formulated as a method through which a supposedly objective observer could view social interaction, analyze it, and later deliver his or her findings. The ethnographer assumed that his or her presence at the location and his or her personal beliefs did not affect findings. This fly-on-the-wall model has come under sharp criticism, and many researchers argue that
Why Fetoscopy? Why Now?
55
by simply “being there” an ethnographer does affect the context studied. His or her assumptions necessarily shape research findings. In response to these critiques, new ethnographic approaches are more reflexive, asking the ethnographer to consider how his or her presence affects the context studied, and thereby its findings (e.g., Hess 1997). My research for this book uses new ethnographic approaches recognizing that my being there did shape the context of fetoscopy experiences, and my personal hopes, fears, and beliefs surrounding high-risk pregnancy and reproductive encounters likewise affect the outcome of my analyses and the arguments presented in this book. Like traditional ethnographies placing anthropologists or other social scientists in foreign environments, my ethnography took me to a foreign context: a Western women’s hospital to view and understand fetoscopy. Though some may not view the Western hospital as foreign or exotic, much of it was unlike anything that I had encountered (c.f., Rapp 1999). More vexing, however, was that not all of fetoscopy was completely foreign because I am a consumer of Western medicine. Although I was somewhat familiar with the general customs surrounding scientific approaches to medicine, I lacked formal medical training in obstetrics or high-risk pregnancy. As a researcher I lived the juxtaposition of familiarity and confusion. For ethnographers this is not an unusual state, yet it remains unsettling (e.g., Cartwright 1998). I was fully immersed in a biomedical framework in which I was aware enough to know if something seemed wrong, yet I lacked the specialized knowledge and training to react within professional biomedical customs. When I arrived I did not know what constituted accepted aseptic technique; I did not know how to read the surgical board; I did not know what was considered biomedically normal and what was not. I learned these things with the help of hospital staff. Unfortunately, at times, one nurse or physician would tell me one thing only to be contradicted by another person. I came to recognize from these differences in opinions among the medical staff the uncertainty of their facts. Although all of my medical informants believed in and based their decisions on medical facts, at times they disagreed over what those facts were and how to respond to them. These differences in opinions, further muddied the decision-making context of fetoscopy and added to the complexities of fetoscopy experiences.
56
Chapter 2
If physicians and nurses could not agree on what was happening and how to respond to it, how was a patient-mother, desperate for consistency, to make an informed decision? I ultimately determined these decisions were best framed as informed decisions, based on possibly conflicting information. In this light, being informed is not the same as being certain, and patient-mothers simply made the best decision they could given their highly problematic pregnancies. Because the best decision for one patient may not be the best decision for another, advising them through these processes is tricky for their medical caregivers. My research project was my creation, but even more, a co-creation with those at the hospital. I was both an insider and outsider. As an insider I had a high level of intimacy with many of those whom I studied. Together, we talked through problems and issues, both professional and personal. At the same time, I was an outsider, an observer. This Janusfaced existence, as participant and observer, was at times difficult for me to negotiate and for them to understand. I was a participant who worked with the nurses, physicians, and anyone else (including the patientmothers) who needed extra assistance. Unfortunately this closeness proved a double-edged sword. While I was a trusted friend and researcher with access to incredible information, my participation was also confusing to some of the hospital staff who did not fully understand or accept my interest or research in the fetoscopy program. These individuals included administrators, nurses, and physicians, though many administrators, nurses, and physicians were particularly supportive of my research and valued my presence in their hospital. It is difficult to overstate how tightly connected and visibly linked I was with the fetoscopy team (notably the nurses). Unlike the physicians who traveled between multiple hospitals in the area (including Martinez), the nurses stayed at Holy Names. I, too, stayed at Holy Names because it was the only local hospital that delivered fetoscopy. With time, my interest in all things fetoscopy led to deep relationships with many of the nurses who were also drawn to the procedure and wished to understand it in its larger social and cultural contexts. Yet this close affiliation with the nurses, while valuable, was also perplexing to a few at the hospital who came to assume I was a fetoscopy nurse, although I explained my project to as many people as possible. To offset this confusion, I tried to
Why Fetoscopy? Why Now?
57
make myself as physically different from the nurses. Unlike the nursing staff, I never wore scrubs outside of the operating room and always tried to carry my research notebook, a pen, and perhaps even a tape recorder as I worked at the hospital. Professionals at the hospital would suggest questions that I should consider and interviewees I should approach. At times they took me to places off limits to the layperson: I saw the inner workings of hospital sanitization procedures, pathology labs, and preadmission testing. I do not, however, want to overstate the access granted to me. At no time, for example, was I granted, nor did I seek access to, confidential patientmother records. I also did not attend the ethics meetings in which some fetoscopy cases were discussed.9 My decision not to attend these meetings must be explained. The only part of hospital interactions Dr. Martinez requested I not participate in (i.e., observe) were the ethics meetings (on being asked not to attend specific situations, e.g., Katz 1999; on gaining access to denied documents, e.g., Casper 1998). We had never discussed the ethics board, and in fact I found out rather late in my stay at Holy Names that the ethics board met for twin ligation cases. I mentioned to a few medical professionals that I should try to sit in on the meetings to hear how individuals discussed life-and-death issues relating to their patient’s fetuses. One day a member of the committee approached me in the hall and said that she heard that I was going to come to the next day’s ethics meeting. I was surprised. I knew that a case was pending, but had not yet discussed it with Martinez. I did not know who suggested that I attend the meeting. I arrived the next morning prepared to attend the meeting. I saw Kay, a fetoscopy nurse, and asked her if it was Martinez’s idea that I attend; she was not certain, but knew that the others knew I would be there. I told her that I wanted to wait for Martinez before going to the meeting. When he arrived for the meeting I stopped him in the hall (the others were already assembled in the meeting room). I asked him if it was “okay” with him if I attend. He seemed somewhat shocked by my request and explained that he feared people might not speak their minds freely if I were there. He was concerned they might think I was judging them. I was surprised by his response. This was the first time he had limited my interactions in the hospital. He headed to the meeting as I
58
Chapter 2
continued to stand in the hall. I decided to discuss the issue with him at a later time, and headed away. Less than a minute later, Martinez returned to the hall and called to me. I returned, and he simply said, “They said it’s okay” and motioned for me to follow him. I was confused. He still seemed concerned over my presence at the meeting. As we approached the doorway, I grabbed his arm and we stopped walking. Up until this point he had not excluded me from his practices, patients, or concerns. I wanted to verify that he thought I should not attend the meeting. He looked me in the eye and said, “Yes.” I nodded and told him that I appreciated his concern and would not attend. I placed his many years of fetoscopy decision-making experiences against my few months. Perhaps my attending the meeting would lead people to curb some concerns or express others. Perhaps that would not be a bad outcome. There is no way to know for certain, but out of respect for Martinez’s experience of fetoscopy decision-making and my desire not to cause harm to my informants (including potential patients), I chose not to attend the meetings.10 Just as I needed to feel content in the ethics of my project, I recognized that Martinez must also feel content with the ways in which my project affected his. He was deeply concerned about impinging on the ethics board’s abilities to speak out without feeling judged. Although the loss of these ethics meetings does impinge on my understanding of fetoscopy, I remain content in my decision. My knowledge of the meetings come from my interviews and discussions with its members. With few exceptions, I had an incredibly close relationship with many on the fetoscopy team, and these friendships spurred a trust between us that undeniably broadened my access to individuals and information. I was not a medical professional or hospital employee, however, I was a guest, a social scientist conducting an ethnographic analysis of fetoscopy creation and the decision-making surrounding it. As an outsider, I found myself at times wanting to keep a distance from the informants (as opposed to my friends) to retain some sort of objectivity. I wanted to avoid the painful critique of going native or of being overly biased by emotional attachment to many of the individuals at the hospital. Although numerous social theorists argue that such theoretical and emotional objectivity is an impossibility (e.g., Harding 1991; Restivo
Why Fetoscopy? Why Now?
59
1994; Wyer et al. 2001), I found it difficult to remember this, especially when informants stressed the advantages of having an outsider analyze fetoscopy objectively, as though I had no personal interest in what I studied beyond its academic impact. As these assumptions emerged, I grew more anxious. I knew that I was not and could not be objective; how could I convince them that not only was objectivity impossible, but the assumption of its existence could even be detrimental to critical, reflexive analysis? The importance of objectivity was a source of recurring tension between Martinez and me. Over time, it became clear our understanding of objectivity in data accumulation was different. He was concerned that my project not be “biased” and that it reflect the “real” context of fetoscopy. For him, objectivity implied that I collect both the good and bad outcomes. For me, objectivity had less to do with who and what I studied than with understanding the scope of my perceptions and recognizing the limits that my method and theories placed on my analysis. At one point during my work I was so concerned with his preoccupation with objectivity (and our different use of the word) that I worried he might not understand my project and approach. Fearing future backlash or misunderstanding, we sat down to discuss objectivity. I explained that I was a value-laden researcher and as such my study, or any study for that matter (including his own), was inherently biased in multiple directions and brought with it the values and assumptions of the researcher. Following our exchange, Martinez understood how I viewed objectivity, however, he, and others, retained the belief that one could study something by neutrally looking at the good and bad outcomes associated with it, and that I could somehow achieve that stance. I assured him that I was looking at good and bad outcomes as neutrally as possible, but my values and politics necessarily affected the development, process, and outcome of my work. While I tried not to be judgmental and to be as open as possible to a variety of positions and beliefs, I also recognize the impossibility of viewing and analyzing circumstances without the influence of my own background and training, including my morals and politics, and the emotions that drive them. It is not clear how distant from a topic an ethnographer must be to accumulate valid data (e.g., Browner 1999). According to feminist
60
Chapter 2
methodologist Shulamit Reinharz, the question of distance has been an issue for many researchers: The methodological literature on participant observation is divided among those who advocate closeness and those who advocate respectful distance between the researcher and the person studied . . . [footnote]. Respectful distance is supposed to avoid the danger that the researcher will “go native” or identify with the people studied; closeness is supposed to enhance understanding. In the “respectful distance” model, overrapport represents the researcher’s neurotic failing to maintain objectivity or maintain his/her separate identity . . . [footnote]. Many feminist researchers, by contrast, take the position that closeness with women is necessary in order to understand them. (Reinharz 1992:67)11
As Reinharz suggests, feminist approaches to research may base studies and questions on friendship and willingness to care about the informant and context. She explains: “Another way to think about the dilemma of closeness/distance is to acknowledge that each setting requires the fieldworker to take a different approach. Some settings require anonymous . . . [footnote] relationships while other require intensely personal relationships . . . [footnote].” She concludes, “The setting, rather than methodological ideology, defines the appropriate role” (Reinharz 1992:68). Although Reinharz is writing about feminist research, her assumptions and arguments also pertain to my approach as constructivist research—that is, research based on the theoretical assumptions that all things and knowledge are created and understood through, and are an outcome of, social interaction.12 At their core ethnographic studies are an analysis of the relationships that an ethnographer shares with informants and the experiences and stories that such relationships bring about. In some cases relationships may be more distant or professional in tenor while in other cases relationships may be very personal and intimate. There are benefits and disadvantages associated with each end of the ethnographic spectrum. As Reinharz suggests, I necessarily forged friendships and close relationships with some of my interviewees. At the same time, I also developed relationships that, while cordial and professional, were more distant. My obligation as ethnographer is to consider how my different intellectual and emotional distance among informants shaped my perceptions and analysis.
Why Fetoscopy? Why Now?
61
Just as ethnographers must negotiate how close or distant they wish to be to an informant, they must also decide how familiar they wish to be with a topic before commencing study. Before I left to conduct the ethnography, I read as much as I could on fetoscopy; however, it was not until I arrived at Holy Names that I recognized and appreciated the emotional work that surrounds fetoscopy as a lived experience. It was one thing to understand fetoscopy within medical history and theoretical critiques, but another to accompany patient-mothers and medical workers through their experiences. Although I was prepared intellectually for the work at hand, I was sadly unprepared to face the real data and drama of fetoscopy, including the trauma patient-parents incur as they make life-and-death decisions. When I began this project, I focused so thoroughly on the aforementioned medical reports and social scientific critiques of reproductive technologies that I was relatively unaware that investigating fetoscopy entailed theorizing people’s hopes and fears. As I listened to stories, particularly those of the patient-mothers, I felt a growing responsibility not only to theorize them, but to help them. I did not want to add to their potential objectification by aseptically recording their narratives, and then walking away to analyze it later (c.f., Rapp 1999). One can argue that theoretical findings would eventually help them by drawing attention to their interactions (for example writing academic articles and publishing this book), but I was left with a growing sense of helplessness while at the hospital. During emotionally traumatic and compelling times, patient-mothers and their caregivers were helping me, but how could I help them? Did I need to help them? Should I help them? Was it enough that they had someone to talk to about their experiences? Increasingly, I wondered if I was reflecting a similar voyeurism to that critiqued in medical encounters. Like surgeons using endoscopes, I also peered into life-in-the-making, removed it from its initial context, analyzed it, and now offer my own interpretation of the situation. My recurring question in the field, as now, was, What am I doing to make the situation better? To fulfill a reflexive and constructivist approach to analyzing fetoscopy, I did become involved in fetoscopy development. When team members asked me for assistance, I often gave it. When I had concerns,
62
Chapter 2
I often expressed them. My experiences at Holy Names were coconstructed with medical workers and patient-parents struggling to form narratives and make sense of what was occurring and to whom. We worked to identify procedures and find ways to speak of them. When I was medically or emotionally lost or confused, I approached my medical friends for clarity or advice. When they had concerns such as how ligation and abortion may differ in parental grief, they too would come to me. One area in particular in which nurses found my work of assistance lay in understanding why some people did not like or support fetoscopy. Some nurses so believed in the procedures that they could not help but wonder how anyone could not see it as a great advance in modern medicine. Ultimately, their inability to see fetoscopy from others’ perspectives led some fetoscopy nurses to assume that resistance had to be based on ignorance: all that was needed was education of the nay-sayers. Unlike fetoscopy nurses, I read social science literatures that critically investigated the ways in which reproductive technologies can affect individuals and communities (see chapter 3 for more details). Based on this familiarity, I was able to advise them on how fetoscopy might legitimately be viewed negatively (e.g., focusing attention on the fetus and not on the patient-mother). To help the fetoscopy nurses find ways to educate others about fetoscopy, I suggested “reframing” it in their own presentations less as a miracle of modern medicine, and more as a complicated procedure with many effects. Working to see it as a complex procedure might help them find a way to understand why impassioned arguments broke out from time to time, and to respond constructively to what otherwise might become a hostile, personal argument questioning each other’s ethics and integrity. To illustrate, one day a few fetoscopy nurses were developing a “fetoscopy poster” for nurses’ week. The poster was supposed to highlight the use of fetoscopy at the hospital and draw attention to its benefits. They asked me to join them. Sitting in the hospital library, we discussed what we all thought the poster should contain and, importantly, what to title it. I recorded the following in my fieldnotes: I just . . . participated in a meeting with Sue, Kay, and Becky. They were trying to decide what to write [as a title], etc. [for the poster]. Becky liked the idea of
Why Fetoscopy? Why Now?
63
“The Fetus Has Arrived.” I told her I thought that sounded a bit Star-Treky and that it tended to be a bit fatalistic—indicating that we are on a path outside of human control. Kay liked the idea of a “New Frontier.” I said that I often found “new frontier” within the [medical] literature [and critiqued within social science]. I said that it invoked a cowboy out lassoing fetuses any old way. She said that she still liked it. I worked on it and finally suggested “New Developments in Fetal Therapy Offering Hope at Holy Names.” [They all liked that and] put it down [as the title for the poster].
Although co-constructing the environment that I studied by offering comments and information while in the field may not be readily accepted by some social scientists, for others it may be a matter of course and an ethical imperative. A second example of the sharing and openness that was created between the nurses and me stems from the overt sharing of our professional languages. I started to use medical jargon, and they began to use academic jargon. By sharing languages we came to understand each other’s training and potential usefulness to the developing specialty of fetoscopic research. At the same time, the terms offered us a chance to find humor and comfort in our different ways of understanding the world. To illustrate, one term that we shared was footnote. One day I brought an article that I was writing to the hospital. When I put it on the lunch table they laughed at my extensive use of footnotes. We started talking about footnotes and how they convey information that is helpful, but not necessary, within the text. Over time the term footnote took on special meaning. The nurses used it as shorthand to let me know if there was something occurring in the hospital that might be a background issue for my project but not directly related to fetoscopy. Instead of saying to me, “There’s a procedure I think you should see,” they would say, “I have a footnote for you.” The playful use of language and the openness that existed at my site, as demonstrated in these two examples, was gratifying. I had a place within the fetoscopy team. But now, as I reflect on the time and analyze the experiences, a problem emerges: Which parts of my experiences are eligible for reporting, analyzing, and discussing in public venues (e.g., this book) and which are not? In situations where I believe that information was not given as research material or in circumstances where my analysis may scoop medical research findings, I do not
64
Chapter 2
reference the matter in this book. Nonetheless, the knowledge informs my analysis. Reproductive anthropologist Rayna Rapp readily acknowledges that at times she is called on as a “trusted insider” to help genetic teams with patients or to offer advice on improving services for amniocentesis (Rapp 1999). In these cases she assisted her informants and writes: “While, in principle, I might have demurred, insisting that I would provide feedback ‘once the study is over,’ in a case like this, the study seemed unending. And the practical needs of service providers and patients are immediate.” She concludes: “The ethics of giving feedback in a ‘real world’ situation where access to resources and the conditions of choice are everywhere at stake had to be resolved in a way that was biased toward what I considered responsible application of my accumulating knowledge” (Rapp 1999:21). From my experience, the “immediate” needs to which Rapp refers often lead to quick decisions by the ethnographer that stem from overtly ethical questions, such as knowing what part of a patient-mother’s procedure counts as local public knowledge (e.g., whether or not a surgery is on the schedule), to the less overt, such as deciding if the ethnographer should answer questions about whether the physicians seemed concerned or confident during surgery. Ethical quandaries abound in relationships with informants, and thus these relationships prove both rewarding and problematic. As Rapp refers to them “serendipitous” or “karmic” approaches, while enjoyable, are also difficult when the researcher becomes a “guinea pig” within her own studies (Rapp 1999:14). Following over two decades analyzing amniocentesis, Rapp finds herself in the position of information gatekeeper, trusted adviser, and informed friend. She can never leave the research behind because research and life are now relatively indistinguishable. She explains: When old friends and neighbors have amniocentesis or chronic villus sampling, I call them up. When their friends and neighbors have a question about amniocentesis or a prenatal diagnosis problem, I am likely to receive a phone call in return. Such contacts provide an escalating whirlwind of data that blows through my daily life, and the daily lives of my friends and family members. (Rapp 1999:14)
Why Fetoscopy? Why Now?
65
It is not surprising that reproductive analyses blow through daily life, because reproduction (the wish to attain or avoid a pregnancy), for many, is part of daily life. Like Rapp’s experience, I too have had friends ask about my work in anticipation of their own reproductive experiences. When a friend of a friend of my sister-in-law was told that she was expecting twins, my sister-in-law called to ask, “What is the name of that twin disease you study?” When studying human reproduction and decision making, the researcher can never just “leave the work at the office.” Any pregnant, or would-be pregnant woman’s dreams, hopes, and experiences become relevant to the study and context of a new reproductive procedure, including her own. Frequently patient-parents, medical staff, and others that I interviewed would ask me, what do you think of the procedure? Although I came to anticipate this question, each time it was asked I was reminded that prenatal decision making is often cast in a context of right and wrong, true and false, fair and unjust. The longer I worked at the hospital and the more I learned about different experiences, the more difficult it became for me to think in such stark dichotomies. My responses to these inquiries often reflected my belief and findings that, though some generalizations can be made about fetoscopy experiences, the meanings and effects of procedures are best understood by analyzing particular social interactions of specific pregnancies. From these details, general themes emerge; however, general themes do not, and should not, imply right and wrong fetoscopic uses. Acceptability is contextual. Studying Up and Looking Down As ethnographers and others turn their attention to their own cultures as suitable areas for analysis, many researchers have found themselves in theoretical and political binds (e.g., Browner 1999; Casper 1997; Rapp 1999). The difficulties of entering a context in which professions have a firm grasp on a local environment is certainly threatening to many research projects that seek to analyze and critique those professionals. Not only does the ethnographer require the invitation and consent of those studied, but also her or his expertise, views, and ability to add to
66
Chapter 2
conversations or experiences may be overlooked or ignored. Anthropologist Carole Browner humorously illustrates this point when commenting on the potential benefits and risks of conducting medical ethnography within biomedicine: While in some cases this has led to fruitful collaboration, often the results can be frustrating for all concerned. To give one example, my colleague, Linda Hunt spent three years working in a research center in a department of medicine on a number of projects focusing on the impact of chronic illness on ethnic minorities. Her efforts to introduce an anthropological perspective were often rejected by her physician-collaborators, who viewed such concerns as esoteric and beside the point. She has characterized her central experience at the research center as an ongoing clash of paradigms. As her tenure there was drawing to an end, she described a dream she had. She wrote, “In my dream I sat at a conference table, arguing with a group of frustrated physicians who were earnestly urging me to see their point: ‘If it looks like a duck, walks like a duck, and quacks like a duck, it’s a duck!’ one shouted. Equally frustrated, I shouted back: ‘What do you mean by ‘a duck’?” (Hunt 1994:1). (Browner 1999:138)
Ethnographers and those they study may have hardly commensurate worldviews; thus, the success of many studies relies on the shared willingness of the ethnographer and those studied to be open, honest, and critical about their activities and relationships with one another. Medical ethnography is risky when the technologies are morally amorphous and trust and respect between the social scientist and medical team is not achieved. Trust is a rocky, two-way street. In recent years, a notable and sad case emerged in the field of fetal surgery and social scientific analysis when medical sociologist, Monica Casper, attempted to conduct the first ethnographic account of open fetal surgery (Casper 1997). According to Casper, after she conducted an interview with a former patient, she sent the woman copies of her work (published and unpublished). The patient was pro-life and did not like Casper’s politics and by extension her arguments. The former patient sent the unpublished work to the fetal surgery team. At this point, Casper’s key informant (at the hospital) called Casper and expressed worry that her identity was not well masked; she further let Casper know that the fetal surgeons felt angered by her work (Casper 1997). To better understand each other’s view of fetal surgery and Casper’s project, the two of them sat down to discuss their differences. Casper writes,
Why Fetoscopy? Why Now?
67
For the most part she agreed with my critical perspective and theoretical arguments. Yet she felt that I portrayed the fetal surgeons as having no integrity when they are in fact “really nice people.” I explained that as a sociologist, I am not concerned with the personalities of the fetal surgeons. Rather, I care about their roles as medical workers in a specialty focused on fetal work objects, although biographical information may make for juicier narrative. After the meeting I felt as if my key informant and I had resolved at least most of our problems. (Casper 1997: 249)
Although Casper and her key informant were able to resolve most problems, the fetal surgeons remained angry. Casper is reflexive in her work, asking if she misrepresented herself, but ultimately finding that while she may not have always been forthcoming, she did not hide her politics. Her research activities, though well meaning, led the physicians to sever contact with her and she became “persona non grata” at the hospital (Casper 1997). Casper’s case offers compelling reason and evidence that ethnographers may be both physically and intellectually pushed out of a research site should the differences between their views prove too alienating to those studied (e.g., Casper 1997, 1998). Casper and I share some theoretical and political concerns, but we diverge in our methodologies. Casper framed her work as a woman’s health issue and, as she states, is not interested in the personalities of the surgeons. I, on the other hand, though recognizing and accepting that fetal surgery should be seen as a woman’s health issue (and the larger sociological concerns it raises), am also fully entrenched in a new ethnographic approach in which emotions and personalities must be made apparent. While conducting my ethnography, it became clear that emotions and personalities (e.g., kindness, empathy, distance, curtness) directly affected how women-patients and their caregivers (and supporters) reacted to fetoscopy. As fetoscopy nurse Kay Brown told one grieving father, “We give a lot of hugs here.” For this analysis, the fact that hugs are given freely and that nurses do pray during surgery is as important to data collection as recording narrative descriptions of fetuses. Though Casper and I take different methodological approaches, the key is not to accept one over the other, but to bring them together to see more clearly the activities that perpetuate fetal surgery/fetoscopy as a woman’s health issue and as an individual, traumatic event.
68
Chapter 2
The theoretical and methodological difficulties of studying professions that have a higher concentration of power within them than that of the ethnographer is often termed studying up (e.g., Casper 1997; Katz 1999; Nader 1969; for criticism, see Layne 1998). When I arrived on site, I anticipated having difficulties studying up. I assumed that I might be the next ethnographer to lose a research site. My assumptions were incorrect. Instead, it became clear that traditional studying-up problems, such as those affecting Casper, would for the most part not plague my research (e.g., Casper 1997). As noted earlier, I developed strong and close relationships with many of the fetoscopy medical workers. These relationships, and my amorphous identity that shifted between being a participant and an observer led to other methodological and practical tensions, which shape the findings presented in this book. Following the new ethnography, in which the ethnographer is visible at the site, in the text, and critically aware how her personal relationships affect project development, implementation, and analysis, at the hospital and in this work, I strive to account for my own subtle shaping of the project and to remain attentive to how others shaped it through their interactions and experiences with me (e.g., Landsman 1998; Star 1995). One of the more exciting attributes of the new ethnography is that it includes in the analysis the feelings and emotions of the people giving, receiving, and analyzing medical interactions. Through these interactions meanings are made. At Holy Names, it soon became clear that the nurses, more than others, tended to be very open about their feelings regarding patients, procedures, and other issues. This was particularly the case with Kay Brown, Martinez’s medical assistant and coordinator of the fetal therapy program. I spent most of my time at the hospital following Kay to various medical events; as a result, her vision and beliefs shaped and deeply affected my questions and findings. If Kay or others felt that a patient was too upset, too sad, or too scared to meet with me, they might readily suggest that I not approach the patient. In these cases, I willingly accepted the advice and complied with their wishes. These instances were few and far between; however, it does demonstrate the potential for others to accuse me of being co-opted or not being critical enough in my methodological approach—I could be accused of going
Why Fetoscopy? Why Now?
69
native. However, my willingness to heed their advice and wishes also demonstrates my professional respect and personal faith in those with whom I lived, worked, and studied. This trust and respect was built over time and through multiple interactions. My approach was to acknowledge our similarities and differences in as open an environment as possible. While we may not have always agreed, I am thankful to the professional and personal integrity of those at Holy Names who not only recognized it might be risky to open their activities to social critique, but ultimately in word and deed assisted in a genuine effort to learn about what they did. In fact, one day, toward the end of my time at the hospital, I interviewed Martinez. I asked him if he saw any advantages or disadvantages in my being at the site. His answer alludes to the larger political and social context that we created: No disadvantages. The only disadvantage perhaps will be the workload imposed on my . . . [administrator] upstairs, but we don’t mind, because it’s part of what she can do. We do it with pleasure. So, no disadvantage. Quite the contrary. All advantage. Number 1, because you are going to be able to complete your thesis on what you started out to do and although this may sound trivial, this may sound like a given, we both know that this, in fact, may not be the case, that somebody starts out a thesis project and it falls through in the middle of the project, and you know, you have to sit down and think about something else to do and it just doesn’t necessarily flow. So, number 1, that you will be able to do your thesis project. Number 2, because I don’t think that we have, in fact, seen all of the angles that our activity [that it] can be seen from and you certainly provide a unique angle, . . . a point of view, to what it is that we’re doing. Anthropological point of view, a liaison between technology and the patient. It’s a very, very unique point of view. And I think that the more we learn, the more angles we learn of this activity, the way it’s seen by patients, the way it’s seen by nurses, the way it’s seen by communities, the way it’s seen by politicians, by other healthcare providers, paramedical staff, etc., etc., the more we’ll be able to avoid problems and the more we’ll be able to improve on what we’re doing. So, all I see with your presence here is a great advantage.
Casper’s experience was different. She notes about her site and its inhabitants, “Ironically, although fetal surgeons and other medical workers have often called for social and ethical analysis of their work, they squirmed uncomfortably under the sociological lens when it was directed at them. Yet this is understandable, especially if one takes the deeply
70
Chapter 2
controversial nature and contexts of their work into account” (Casper 1998:24). The politics of my site, and the personalities contained within it, created a very different context. A Product of Emotional Work: Moving Forward Developing, delivering, undergoing, and analyzing fetoscopy experiences is difficult. A timeline or data point cannot measure all of the efforts in these practices. Much of the meaning and experience of fetoscopy is invisible, tacit, and silent: patient-mother tears, physician glances to the floor, and long blank stares at informed consents, all created the emotional context of fetoscopy. I embraced, sometimes with pain and confusion, the emotional, yet critical, view that my ethnography afforded. While on site I vacillated between being overjoyed and distraught over my involvement with fetoscopy. When cases ended positively, or former patients contacted the hospital to let us know the baby had arrived and Mom was doing well, I felt a tremendous amount of pride in “my site.” The procedure offered a desperate mother a final chance to save her baby. At other times, I cried on hearing that a mother had lost her pregnancy or perhaps worse (from my limited, yet personal perspective) when I accompanied a patient-mother to a follow-up ultrasound, only to realize that her fetus-baby was unexpectedly dead. As patient-mothers rode their emotional roller coaster, so did I. This is NOT to say that we shared the pain or hopes, as the loss of a wished-for baby is likely one of the most painful experiences imaginable (e.g., Layne 1990, 1992, 2003). I was amazed and touched by the honesty and forthrightness that many brought to their conversations with me. Reflecting their honesty, in this book I give as much information about patient-mother and provider experiences as possible without jeopardizing individual confidentiality and anonymity. In an effort to increase the anonymity of the medical workers I do not give their exact age; rather I place them in an age range. Holy Names is small enough that knowing a professional’s activities and knowing their age can expose the identity of an informant. Nonetheless, a person’s social, cultural, and economic contexts (among others) affect how they, along with those surrounding them, understand their procedures and experiences. Because each experience is
Why Fetoscopy? Why Now?
71
unique, it is important to examine fetoscopy interactions within their specific contexts; however, too much detail may threaten confidentiality. To offset this loss, in some cases I alter aspects of conditions and fictionalize components of patient-parent and caregiver stories in this book.13 Although the changes do disguise elements of the experiences offered by patient-mothers and those who care for them, to the best of my ability I strive not to alter themes or particular details fundamental to the individual experience. In an effort to extend as much anonymity as possible, all names in this book (including health care organizations) are pseudonyms.14 Being critically aware of my own politics and emotions, including deciding what I did and did not reveal of my personal life to informants, made me reflect on their political and emotional concerns surrounding my project. I was particularly intrigued that many at the hospital seemed concerned about my studying fetoscopy when they learned that I was married (to a man) and did not have children. Their concerns (particularly those of the fetoscopy nurses) stemmed less from worry that I would not be sympathetic to patient-mothers trying to save their fetus-babies than worry that I would overinternalize fetoscopy stories. Just as nurses worked to keep themselves somewhat distant, so they worried that I would hear too much and forgo children for fear of what could happen. Although many of their concerns reified the position of woman as mother and nurturer, their concern for my psychological and emotional wellbeing was touching, and I found their friendship and support invaluable. Like the nurses, some patient-mothers also worried about the effects of their stories on my personal reproductive decision making. To carry on their concern, I also recognize that readers will be affected by the stories in the following pages. I hope that all who read this, or encounter fetoscopy, see it within its full context of hope and despair and not as either a good or bad event. I was amazed that patient-mothers who suffered their own traumas would express concern over how their stories might affect me (on trauma narratives, see, e.g., Brison 1997). At the same time, they wanted to be interviewed, to get their story “out there,” and would do nearly anything to help bring attention to fetoscopy and the little-known conditions it treats. During my interview with Lucy Dover (who had consented to the tying off of a nonviable fetus-baby to
72
Chapter 2
help save the other fetus-baby in a twin gestation in 1992), she asked about my family life. When I told her that I was married, she immediately, and somewhat jokingly, broached the seriousness of what I studied and how it might affect my future decision making. Like the nurses, Lucy and others assumed that, because I was married, I would likely have children. She explained that once you know what might happen, it is difficult to ever return to believing that pregnancy can be nonproblematic: Lucy: You’re probably hearing about all these pregnancies and thinking, you’ve been married two years. Oh God, there’s [laughing]. . . . DB: Actually, I have been known to come home and just unilaterally proclaim that we’re not having children, because I do look at the highrisk stuff. . . . Lucy: . . . the counselor there at . . . [the hospital] . . . she said, “. . . if you ever were to get pregnant again, you will not have these problems. It is so unlikely that you will ever have these problems again. Don’t even”—And then when I had called [to tell them I was pregnant again]— it wasn’t even a question not to go to [that hospital] . . . to have the amnio and to have Dr. Wilson do it and what not. I was going to have [the amniocentesis] . . . at another hospital, but with Dr. Wilson doing it. And they said, “No, no, no, we want you here at the hospital. Just in case.” Although the chances of Lucy having trouble with her subsequent pregnancy were as likely as anyone else, when she did become pregnant, statistical reasoning took a backseat to general concern and fear of the past. Like Lucy with her second pregnancy, I realize that the chances of these complications ever happening to me are small; however, knowing that babies are born without heads and twins do die with abnormal circulation, I cannot return to a vision of pregnancy as blissfully waiting for the “little miracle.” The transition of pregnancy from nonproblematic to potentially traumatic affects my willingness to support a highly technical invasion into pregnancy, creating a context in which I may be more willing than others to accept fetoscopy or other invasive reproductive procedures.15 Though I am not a technophile, it is important to acknowledge that following my research, experiencing a “troubled” pregnancy
Why Fetoscopy? Why Now?
73
is one of my greatest personal fears. I do not know if I would make the choice to undergo fetoscopy, but should I become pregnant, I will likely pursue and undergo other forms of prenatal testing (e.g., ultrasound and amniocentesis), accepting their medical and emotional risks. I am politically, emotionally, and ethically involved in supporting the site and those whom I met. This is not to say that I wish for fetoscopy to develop and expand regardless of intent or effect. Indeed, my investment is not arbitrary: my hope and goal is that fetoscopic procedures develop in ways that are socially and culturally aware. I am investing in the hope that this work, combined with ongoing explorations of fetoscopy elsewhere, will be developed and pursued in ways that are fair, comforting, and mindful of the similarities and differences separating individuals. The following chapters build on this hope to examine both the literature in which fetoscopy is placed and the social interactions that surround its use. As noted earlier, fetoscopy occurs within a larger cultural context. My work highlights the lived experiences of particular individuals. Yet, as Casper convincingly argues, fetal surgery is also a woman’s health issue; and as Rayna Rapp notes, it is difficult to attribute a single medical decision solely to an individual (although individual interviews are also used to support arguments of social theory). The following chapter explores some of these larger cultural assumptions that undeniably constrain fetoscopy decision making. Although the following chapter moves away from the details of the individual, it is important to explore these larger contexts and, at times, the invisible, entrenched cultural assumptions that bear on individual patient-parents and their medical providers.
3 Fetoscopy in Cultural Context: Fetal Politics, Reproductive Choice, Religious Experiences, and Maternal Blame
Fetoscopy affects people differently; however, no one who encounters it will ever be the same. The procedures often alter worldviews and force individuals to come to terms with difficult (sometimes unimaginable) decision making. Whether a patient-mother who will never again see her body in the same light, a physician who is amazed by or hesitant about using such technology, or a media report proclaiming how medical advances allow “miracle babies,” fetoscopy affects us all. My work explores a particular site, Holy Names Hospital. As described in the previous chapter, I came to know patient-mothers and physicians (among others) and developed personal relationships with many of them. However, an analysis that examines only this local level of fetoscopy (i.e., one hospital and the individuals within it) is necessarily limited. Fetoscopy has implications beyond the individual; they extend to the widest social levels, where federal law, abortion politics, and world headlines engage people of varied religions, nationalities, and cultures. Exploring fetoscopy involves a careful and necessary balancing act, overprivileging neither the larger social context in which fetoscopy occurs or the individual woman and her caregivers who experience a particular procedure. Most of my analysis highlights the concerns and experiences of the individual, therefore, it is imperative to underscore the importance of recognizing its larger social context as well. A fair and meaningful analysis of fetoscopy must account for individuals’ needs and acknowledge the power and invasiveness of fetoscopy in Western medical and popular cultures. In her aforementioned work examining open fetal surgery, Monica Casper explores the ways in which the fetus has transformed into a
76
Chapter 3
patient. She examines the tensions between an individual’s decisions and its larger political manifestations, reminding readers that fetal surgery must occur on or through a healthy woman’s body to reach the unborn. As Casper notes, fetal surgery must be recognized as a medical procedure that builds on current assumptions of appropriate maternal behaviors and continues to shape these beliefs. Fetal surgery should thus not only be viewed as a prenatal procedure, but also as a woman’s health issue (Casper 1998). A social analysis exploring only this level of politics is also short-sighted, however, as it may threaten to marginalize already suffering women by generalizing their experience within larger political battles in which they become faceless, nameless, and all too often, voiceless. Casper’s sociological approach highlighting the larger politics of fetal surgery and my ethnographic examination of individual meanings are not antithetical. They are two ways to examine highly complex medical interactions. As noted earlier, one approach begs for the other to clarify the many views of fetal surgery participants and the many theoretical levels at which medical interactions are analyzed. Although a number of larger cultural issues are brought to bear on fetoscopy decision making at Holy Names, four merit particular exploration: fetal politics, reproductive choice, Catholic ethics and religious needs, and maternal blame. Like a ven diagram, all of these cultural issues converge at Holy Names while women attempt to make sense of their situations. The general invisibility of these issues starkly contrast with their power. As a woman or physician makes sense of a particular pregnancy, she may not recognize that other, less visible factors are also influencing her decisions. The theoretical arenas in which fetal politics, choice, religion, and maternal blame converge is where fetoscopy at Holy Names is best examined to understand the often invisible assumptions that implicitly pressure women and their caregivers to act and react in culturally patterned ways. This chapter explores some of the larger social and cultural concerns affecting fetoscopy development and delivery while also bringing individual experiences into the examination. Fetal Politics Fetal bodies are “materializing” in professional medical cultures while increased public use of fetal imagery has made the fetus a subject of
Fetoscopy in Cultural Context
77
popular culture and a potential patient (Morgan 1999). Fetal imagery in public spaces may entrench the in utero entity as an autonomous individual and invite assertions of fetal rights separate from a woman’s reproductive rights.1 Ultrasound and endoscopic images appear daily throughout the United States in a variety of public spaces (e.g., television programming, billboards, and newsprint). Once individuals become aware of the popularity of the fetal image it is often shocking to find how extensively it is used, especially in advertising (e.g., Taylor 1993). The plethora of fetal imagery and increasing public awareness of it leads some to argue that there is a “public fetus” in Western culture (Petchesky 1987; Taylor 1993). Its effect is to view the in utero as a separate entity from the woman who carries it and, in its extreme, as not reliant on and potentially in conflict with her. Noncritical acceptance of the public fetus (i.e., a social abstraction) and the particular fetus (i.e., an embedded, material entity) is achieved in part through the proliferation of fetal imaging technologies. Although viewing a particular fetus may be enjoyable for some (e.g., a woman with a wanted pregnancy), it is necessary to ask what political context underlies such images and how might these politics implicitly and explicitly affect individual women and societies at large (on the ability to “see” a “baby” through ultrasound, see, e.g., Mitchell 1994). The theoretical and political conundrum of analyzing the public fetus and fetal imagery is that it is difficult to examine the effects of fetal visualization without accepting or furthering claims of the fetus as an independent entity and, by extension, claims of fetal rights (e.g., Taylor 1998). As theorists proliferate fetal imagery through social critique, they cannot control its value in public culture.2 The creation of the fetal-patient has depended, in large part, on creating a fetal presence. Increasingly, the fetus not only has become a bona fide patient but has assumed a social role. In many cases, fetal imagery conjures up (or politically forces) the need for protection of the fetus. The salient question is, from whom or what does the fetus require protection and why? As this new patient emerges so too do contexts that offer it medical care. MacDonald, in critically examining this point, states, “By imagining the fetus as a tiny potential patient, more patients are created for doctors to treat—patients that are more interesting, more expensive, more experimental, patients that require specialists”
78
Chapter 3
(MacDonald 1994:92).3 Fetoscopy creates color images of the in utero fetus. Simply put, it adds to the identity of the public fetus. Ironically, these same images are particularly problematic in high-risk obstetrics, in which fetus-babies are most at risk and pregnancies are most likely to undergo considerable testing and monitoring: the sicker the fetus, the more likely it will be tested and observed. During fetoscopy, two forms of images are created: video and still frame. In all cases at Holy Names, the video of surgery was kept by the physician for ongoing research; however, a second visual, the “snapshot,” was at times shared with the patient-parents. During surgery, the fetoscope relays images to a color monitor (similar to a television set) in the operating room. The monitor offers real-time color imagery of the surgery. The snapshot, however, was more akin to a Polaroid photo in which a single image was captured and printed. While these photos were used for research, in some cases the medical team also gave the photos to the patient-parents as a keepsake of their surgery.4 These photos were colloquially referred to as “baby pictures” and generally contained a fetal profile, hand, or other distinctly humanlike feature.5 Although many patient-parents enjoyed receiving these images, they remained political artifacts that carried assumptions about what a baby is and is not in Western culture. The emotional power of the snapshots cannot be overstated. To illustrate, one day Kay and I had some baby pictures from a surgery. As we walked through the hospital, we saw the patient-mother’s husband. Kay approached him and held out the photos as we walked alongside him. The images so shook him that he stopped immediately, putting his hand over his chest. His eyes widened as he realized that they were photos of his sons, in utero. He was overwhelmed with emotion as Kay told him they were his to keep. He thanked us profusely and hurried off with the photos to show his wife. Like women who joyously bring their ultrasound images to work or tape them to the refrigerator as “baby’s first picture,” this couple proudly displayed the two newest members of their family on their hospital room wall. Sadly, a few months later I received a letter from this couple. Their sons did not survive. Are the photos now a painful reminder of what they lost or proof that their sons did exist? Perhaps the photos now serve as a bit of both (c.f., Layne 2003).
Fetoscopy in Cultural Context
79
There are multiple detrimental effects to increasing cultural acceptance of fetal images; at the same time, many of these images offered patientmothers an empowering opportunity to see their fetus-babies as they worked to save them. Holy Names workers and others involved in building public familiarity with in utero images rarely recognized that their individual caring activities (such as giving a desperate patientmother a picture of her developing fetus-baby), while done with compassion, were also political decisions that affected a patient-mother’s construction of her and her fetus-baby’s identities as well as the cultural milieu of their interactions. To affect one is to affect the other. Of the women I met who underwent fetoscopy, those who consented to diagnostic embryofetoscopy offered some of the most traumatic stories of fetal visualization. Little-known diseases, often referred to as “orphan” diseases because of their rarity, are generally unknown to most people and can be difficult to diagnose. Some of these conditions may be inherited while others are not. What they have in common is that they are often difficult to research and find information on their effects. For patient-parents facing these orphan diseases, the National Organization for Rare Disorders, Inc. (NORD) may prove an invaluable informational source. NORD is a nonprofit informational clearinghouse covering more than 1150 rare diseases and offers some patients an on-line community where they can share their experiences. Unfortunately, of the sixteen conditions amenable to diagnostic fetoscopy, only six are covered in the database (Quintero 2002e).6 Not only are these women facing littleknown conditions, but even the clearinghouse developed specifically to help individuals find information on such orphan diseases, syndromes, or characteristics may not list the condition in question. If the adage that you should “do your research” to learn about your health and discuss treatment options with your doctor holds any weight, it clearly fails in many of the conditions that women facing diagnostic embryofetoscopy may consider. At best these women may be left to their referring physician, fetoscopy surgeon, and Web sites that may or may not hold valid data. To illustrate, an Internet search of amniotic band syndrome leads to both any number of Web sites on the medical condition and to information on the band Narcolepsy’s release of the demo album “Amniotic Band Syndrome” in 1993. Although the Internet may prove valuable
80
Chapter 3
to many, it also provides incomplete and frustrating information to others. Diagnostic procedures are considerably shorter than operative fetoscopy, and a woman may elect to undergo a local anesthesia so she can watch along with the physician as he or she makes a diagnosis. In such cases, women may join the physician as the “reader” of the image looking for the signs that she believes are determining factors for fetal health. Some found being awake and watching the surgery a positive experience in which they could join the physician to bring their knowledge to bear on their pregnancies. Others expressed difficulty in viewing their unborn fetus-babies, as it was never certain that their fetus-babies would survive.7 Although the creation of the public fetus and the possible cognitive disconnect that a particular patient-mother may feel while watching her own surgery should not be underestimated, it is also intriguing that some women find these visuals empowering or liberating when it enables them to consider their position as reproducers and mothers (c.f., Hartouni 1993). Although diagnostic embryofetoscopy and needle embryosfetoscopy differ in their ability to access fetal circulation, they are similar in that both offer highly refined visual diagnoses and allow women to see their embryo-fetus in utero. Here the effects of viewing one’s own fetus converge with an awareness of the public fetus and proved troubling to some patient-mothers. As time passed, Martinez and his research group have started performing operative procedures under local anesthesia. When I returned to the hospital in 2005, I was invited into surgery to see the new equipment. Most of the items remained the same (e.g., the surgical table, the anesthesia cart, and the laser machine) but on peering up, I saw the room had changed dramatically. Monitors had joined the overhead surgical lights. I was informed that the monitors were placed so that patient-mothers could watch their surgeries. To better understand the approach, Martinez invited me to sit in on the surgery. I agreed. Once the patient-mother was taken to surgery and prepped, I entered the room. Immediately, I realized that she could not see the video monitor, nor could she hear the physicians. Although she was awake, calming music filled headphones covering her ears, and a mask blocking the glow of surgery covered her eyes. It was not until the end of surgery that
Fetoscopy in Cultural Context
81
Martinez and his surgical team removed the devices covering this patient’s eyes and ears, allowing her to hear the physicians speaking and watch her fetus-baby on the monitor. I later learned that the decision whether to view the surgery was the woman’s. In this case the patient-mother decided not to watch or listen to her surgery. Other patient-mothers did watch the monitors during their surgeries. Annette Palatine, was 29 in early 2005 when she underwent surgery for twin-to-twin transfusion syndrome (TTTS); I interviewed her in September of the same year. Her memories as a new mom were quite clear, and she told me a great deal about the most recent iterations of patient care. She told me that she had watched her surgery, and I asked her to elaborate: what was it like to watch? She explained: It was weird because I was really sleepy and they kept telling me “oh, you’ve gotta watch this, this part’s cool!” And I was like okay, I’ll watch it on the screen. And it was really different. It didn’t seem real, that it was my body I was looking at. But it was just neat to see . . . you know, they were able to show me my babies . . . I watched them while they were doing it but I didn’t really know what they were doing while they were doing it. But then afterwards they were going through and showing me this is the fingers and the eyes and that was really cool. And then having the pictures. They printed out pictures for me and that’s something nobody has, you know? I’m like yeah, they were inside my uterus and took pictures of my babies. That was pretty cool.
Being awake not only allows some women the option to watch their fetus-babies, but importantly, also allows them to watch what is occurring in the operating room. Monica Estes was 28 in 2004 when she underwent laser surgery for her twin sons suffering from TTTS. She was awake during surgery and remembers the images. Yet, the procedure is not all she remembers. As we spoke she mentioned something that I had not heard before: her attention turned to the physical structures in the surgical suite and the portable emergency tables suited for preterm, ill, babies. The tables stimulated thoughts of the possibilities that, should a complication arise, the surgical team may need to deliver her babies, who would likely not survive. She explained the fear: Being in the O.R. and being awake and watching and seeing my babies, who were stressed but still fighting as hard as they could on that video screen was just such an amazing emotion. But yet at the same time . . . I saw the two basinets sitting there in the event that I would miscarry, you know, they were too young
82
Chapter 3
gestationally to save, and I knew that. It was just a very emotional and heart wrenching time.
The emotion aroused by seeing her in utero children on the monitor balanced with the pain of realizing how serious the condition was and how the surgical team needed to prepare for the worst case—the emergency delivery of her babies. In some cases patient-parents found fetoscopic images and other visualization technologies empowering entrances into their pregnancy experiences; in other cases, the images created a new paradox in which hope for a successful birth simultaneously included the pain of perinatal loss (c.f., Taylor 1998). For example, following fetoscopy, some patientparents had difficulty viewing follow-up ultrasounds. Especially in cases where a single fetus of a twin pregnancy died during surgery, follow-up ultrasounds proved particularly traumatic as patient-parents view an image that no longer moves. It does not look the same; it does not look alive (for a detailed analysis, see chapter 6). For all the good intentions of its practioners and supporters, accepting fetoscopy is to support the ever-increasing role that visualization plays in reproductive medicine and its corollary, to allow room for its widespread use and increasing familiarity in public spaces. The Rhetoric of Choice Western notions of pregnancy often rely on and build upon two assumptions: “normal” pregnancy should develop within a predictable timeline and reproductive technologies are “normal” parts of pregnancy experiences. Within these medicalized pregnancies, prenatal tests and procedures have slowly crept into the consciousness of many women and assumed an accepted role within pregnancy experiences. In this view, pregnancy can be anticipated, and when necessary, altered. For example, labor and birth are hastened or slowed with drugs and procedures including cesarean sections and episiotomies. Although many women, their supporters, and caregivers may welcome these and other procedures into their pregnancy experiences, the procedures reify the prevailing medical view that pregnancy can be altered to fit the assumed course of a normal (and in some cases safer) pregnancy trajectory. Although not all women
Fetoscopy in Cultural Context
83
agree to undergo prenatal testing, and not all physicians recommend it, the general use of these procedures is accepted by many. Unfortunately, while these tests may offer wanted information, few of them offer a treatment option to fix an ailment. The implications of entrenching a particular cultural assumption of pregnancy acceptability (including outcome) are clear when reviewing the laws and policies surrounding and limiting a woman’s choice within her pregnancy experience. A hallmark of Western social and political philosophy is that individuals are granted rights and choices.8 When considering a woman’s ability to choose a prenatal procedure, it is assumed that at any point in her pregnancy she has the right to choose whether or not to undergo or partake in a specific experience. Yet this political ideal is questionable. Already, women have been forced to undergo invasive procedures such as cesarean sections against their will (Kolder et al. 1987). If claims of fetal rights continue, it is possible that other legally sanctioned invasions on a woman’s body may continue and possibly increase. Unfortunately, the rhetoric and political assumptions of free choice does not reflect the lived experience of pregnancy in which a woman, her in utero entity, and surrounding social context may be at odds in determining what is best or right for all involved in the pregnancy (e.g., Rapp 1999).9 Also implicit in this cultural (scientistic) context is the assumption that informed or educated women will support an approach that assumes pregnancy to be an unusual state meriting monitoring and medical intervention (e.g., she undergoes prenatal checkups, takes vitamins, and may partake in ultrasound exams). Cultural assumptions of the mother as nurturer or protector make it difficult for women to refuse prenatal testing or not behave in ways that are assumed to be proper pregnancy behaviors (e.g., Michaelson 1988; Rapp 1999). Equally confounding is that once a woman undergoes monitoring and testing, it may be difficult for her to choose against future tests offering further insights or refining previous diagnoses.10 Use of prenatal technologies (including ultrasound, which is often thought of as a joyous family event and not a medical procedure) may lead to a virtual conveyer-belt in which one procedure begets another. Even when reproductive technologies are touted as increasing women’s “choices,” it is not clear that the information gained makes the
84
Chapter 3
reproductive decision easier (e.g., Lippman 1992; Rapp 1999; Rothman 1986). For example, some tests include a lengthy anxiety-filled waiting period before women receive results, and whether or not women have waited test results may not offer information that women need, such as indicating the severity of a fetal condition, or offer insights into how their community may react to a future child and potential mother (e.g., Rothman 1986).11 Choice suggests a wanted choice and assumes the option not to undergo testing. The rhetoric of choice in reproductive decision making is problematic. Stressing choice as a form of empowerment obfuscates the emotional work of making the decision (Rapp 1999). The assumption that a woman is “free to chose” what tests to undergo is further problematic in the context of U.S. genetics and eugenic social concerns (e.g., Asch 1994; Landsman 1998; Rapp 1999). Disability rights scholars are concerned that prenatal testing could promote a new eugenics in which pregnant women may be pressured to terminate “nonperfect” or sick fetuses (e.g., Landsman 1998; Rapp 1999). Many social theorists are particularly critical of the new genetics and fetal imaging technologies that may serve as technologies of quality control. Fetoscopy, in both its diagnostic and operative manifestations, is a reproductive procedure that may be used implicitly and explicitly for eugenic purposes. To illustrate, two nurses at Holy Names had different concerns surrounding fetoscopy and eugenics. One nurse feared that by allowing sick fetuses to survive, fetoscopy may play a role in passing on “weak genes,” which may not be appropriate. A second nurse, felt that using fetoscopy to terminate a disabled fetus would be inappropriate. While one feared that fetoscopy could be used to keep sick fetus-babies alive, the other feared it would be used to terminate them. In both cases the nurses felt there was a right and wrong use for the procedures and its connection to eugenics was clear, but disagreed over what that eugenic purpose might entail. Medical reports of developments in fetoscopy do suggest a future that some may view as eugenic. Currently, as a diagnostic procedure it can be used to identify rare genetic conditions and offer patient-parents the opportunity to terminate at an earlier stage of pregnancy. As a therapeutic procedure it may also be used to minimize some forms of in utero
Fetoscopy in Cultural Context
85
damage (though not necessarily genetic) that will make disability a rarer state for some. As noted earlier, an often suggested use for fetoscopy in the future is perhaps its most eugenic: to access embryofetal blood and deliver gene therapy (e.g., Reece et al. 1994, 1997). If in utero therapy comes to pass, fetoscopy may be one of the procedures to deliver it. Individual choice to pursue such a procedure implicitly builds social values mediating the meaning of disability and difference in a larger cultural milieu. Choice and its implications are both individual and collective. The notion of choice and fetal politics must also be surveyed in the context of its economic value. The patient-parents I interviewed had access to fetoscopy; however, just because people can afford the procedure does not mean they will pursue it, and others who want it, may be unable to afford it. This latter group is ultimately left to other less costly procedures, some of which carry higher rates of fetal impairment and loss (e.g., Hecher et al. 1999; Ville et al. 1995). This situation leads some fetoscopy researchers to argue that medical monies and efforts, and by extension public awareness and policies, are currently directed toward technologies that are not as effective as fetoscopy and that pursuing fetoscopy as a viable obstetrical tool would be a more appropriate course for medical policy and technology development (Hecher et al. 1999:723).12 Depending on the interests, assumptions, and approach to a critique, the decision to pursue fetoscopy can be considered both economically worthwhile and wasteful. Proponents of fetoscopy might argue that the approximately $20,000 procedure to save a fetus (more fetuses in multiple gestations) is an acceptable expense because it saves the fetus today, and may reduce future medical expenditures necessary to care for an ill baby who received no in utero treatment. Opponents may counter that fetoscopy might also save a fetus that will require expensive hospital stays and further medical treatments. In my interviews I found situations supporting both arguments. Some women had perfectly healthy children following surgery, while others had children with special needs (some of which required expensive medical treatments and equipment to keep their child at home). To illustrate the later case, Ramona Emerson, a 28year-old mother with two surviving sons following her surgery for TTTS in 2002, explained that attending to her sons’ medical needs (both have
86
Chapter 3
cerebral palsy) on a daily basis is a full-time commitment requiring her to learn how to care for them and ensure that she can get them to their therapy appointments and to conduct therapy at home. Although she is happy to have her sons and feels it is the right thing for her life to focus on her sons and their medical needs, their condition has dramatically changed how her family interacts with the world around them. Ramona’s activities outside the house generally fall into three areas: taking her sons to therapy, attending a moms’ group, and taking the family to their very supportive church. Aside from these trips, Ramona stays home and makes certain that her sons receive the daily therapy needed for potential improvement. Although her sons continue to require medical treatment, cases such as this demonstrate that additional, emotional work or personal expenses may be an accepted part of a child’s survival. Fetoscopy is financially worthwhile to only a limited population; however, the potential advantage to this group may be invaluable (e.g., saving wanted fetus-babies). On the other hand, it is undeniable that the resources used to develop fetoscopy would have a larger, immediate effect on more people (including saving wanted fetus-babies) if they were used to support other low-tech interventions and investigations such as teaching healthy maternal lifestyles and offering prenatal care to all. Proponents of fetoscopy also look beyond its potential good for a particular pregnancy and argue that its continued development spurs advances in prenatal care that saves a larger number of wanted pregnancies and lowers overall medical costs (e.g., Hecher et al. 1999). With insights gleaned from fetoscopy investigations, medical researchers are theoretically better positioned to address other reproductive ailments. For example, an unintended consequence of working with fetoscopy for one research group was discovering where and how amniotic membranes rupture (a significant cause of preterm labor). Using these findings, they developed an in utero procedure that potentially fixes the problem (Quintero 2002f; Quintero et al. 1999). In this vein, some proponents support fetoscopy not only for its potential to alleviate specific troubled pregnancies today but also for its legacy in the fields of obstetrics and perinatology. Ultimately economically based arguments for increased social support are not compelling, and promises of technological spinoffs cannot be guaranteed. Economic arguments must be considered along-
Fetoscopy in Cultural Context
87
side the effects of fetal visualization and the rhetoric of choice to understand the larger context of fetal politics. Catholic Ethics, Religion, and Scientism The moral values placed on fetoscopy decision making are informed by a number of cultural assumptions and underpinnings. Class, race, and gender all enter into fetoscopy decision making, as does the ability of different people to negotiate the aforementioned assumptions of fetal politics and individual decisions. However, particularly intriguing cultural arenas to explore fetoscopy decision making in are religion and larger belief systems. At Holy Names, fetoscopy is a procedure that lies not only at the intersection of life and death, but also within an institutional manifestation of religious doctrine—a Catholic hospital. Holy Names Catholic directives are clear: it is a pro-life hospital existing within the Catholic tradition (e.g., once a year its employees may select to attend a service to bless their hands). Although Holy Names is Catholic, not all its staff or patients are Catholic, and not all support its pro-life position. As a Catholic hospital, Holy Names’ use of fetoscopy is both clear and confusing. The hospital’s environment, politics, and moral assumptions affect the willingness of medical professionals and patient-parents to support its current and potential uses of fetoscopy. Surgery to save fetuses is a pro-life activity: the goal is to assist a woman in carrying her pregnancy to a point that she can give birth to a viable baby. Some may see such activities as potentially sidelining the patient-mother as a cost of helping the unborn (c.f., Casper 1998). Yet this standpoint is only one aspect of fetoscopy within a pro-life, Catholic tradition. Each procedure comes with a varying degree of difficulty aligning fetoscopy with a pro-life stance. Fetoscopy is used at Holy Names in four ways: in diagnostic procedures, operative procedures on a single fetus, operative laser procedures, and operative ligation procedures. Each approach is distinct and encompasses a variety of issues of Catholic ethics and individual decision making. Diagnostic fetoscopy is a fairly straightforward prenatal technology designed to diagnose an in utero anomaly. It is not utilized (at this point
88
Chapter 3
in time) for genetic therapy (at least not at Holy Names). It is similar to other prenatal technologies that provide information for women and their caregivers to make decisions regarding the continued path of their pregnancies. Like amniocentesis (which it is sometimes compared to in medical literature), diagnostic fetoscopy can produce useful information on the condition of a developing fetus. From the moral stance of the Catholic Church, accumulating prenatal information is not inappropriate; however, such information cannot be obtained with the assumption that termination is a possible outcome. As journalist Sophie Boukhari states in her article comparing Catholic, Protestant, Buddhist, Muslim, and Jewish doctrines on genetics and the embryo, Catholic doctrine is the most stringent regarding prenatal genetic testing. Describing the late Pope John Paul II’s strong stance on prenatal screening and its potential outcomes, she explains, “Pope John Paul II has repeated it several times, notably in the encyclicals Veritais Splendor (1993) and Evangelium Vitae (1995). These have resulted in a number of prohibitions: ‘no’ to prenatal screening if it is done with the thought of a possible abortion and ‘no’ to most research and therapy on embryos” (Boukhari 1999:24). What a woman selects to do with the information gained from her surgery can be an issue at Holy Names. Though the assumption of the hospital is that she would not make the choice to terminate, and that the procedure was not conducted in an effort to lead her to termination, there is the undeniable possibility that patient-mothers may take their information “off site” and make choices, such as termination, not condoned within the Catholic hospital. As procedures separate from individual patient-parent interests, diagnostic approaches do not challenge the politics or values at the hospital. A vast number of surgeries are conducted on single fetuses, including identifying an in utero lesion threatening the health of the fetus and removing blockages that threaten the fetus’ continued development. In these cases, the hope is to save the fetus and there is little conflict with Catholic doctrine. However, if the surgery cannot alleviate the condition, a woman may, again, seek outside services to terminate the pregnancy. The Church accepts (though mourns) a failed surgery, but not a decision to end the pregnancy. The assumption of the Church is that God determines when and how the pregnancy will end.
Fetoscopy in Cultural Context
89
Operative fetoscopy on twins may be used in one of two ways: laser surgery or ligation. The former is perhaps the least worrisome in the Holy Names context. Laser surgery is designed to separate twins experiencing disproportionate bloodflow through a shared placenta. The hope is to recreate the in utero environment in such a way that both fetuses can survive. No other intentions are permissible; though not all surgeries are successful, and fetuses do die, that is not the desired outcome. Laser surgery is designed and offered with the intention of saving both fetuses. Unlike laser surgery, ligation presents women, their caregivers, and hospital administrators with a multitude of theoretical, moral, and emotional confusions. Unlike cases of developing twins sharing blood disproportionally through a common placenta presenting for laser surgery, with ligation one fetus or in utero entity is deemed nonviable or cannot be saved. In these cases, physicians identify the umbilical cord leading to the nonviable or dying fetus in the womb, and with miniaturized surgical tools, tie off or disconnect the umbilical cord, leaving the placenta to the viable fetus. Separating ligation from abortion in the context of pro-life, Catholic ethics is tricky, yet made possible by Catholic doctrine of double effect. Some patients and caregivers are confused to find a procedure that separates the umbilical cord connecting a woman and her in utero entity having any place within a Catholic context. Administrators and other leaders at Holy Names (including clerical leaders), however, contend that the Catholic doctrine of double effect allows for this measure when one fetus-baby is clearly dying and its twin can still be saved. They contend that the surgery is not intended to end the life of a dying fetus-baby (e.g., fetus A), but to save the life of a struggling fetusbaby (e.g., fetus B). Bioethicist Ronald Munson describes the doctrine of double effect succinctly: “The principle holds that . . . an action should be performed only if the intention is to bring about the good effect and the bad effect will be an unintended or indirect consequence” (Munson 1992:27). The point linking ligation with this doctrine is that though one fetus may not continue to develop, that is not the intent of surgery. Nonetheless, some hospital workers do not accept double effect reasoning, and still others are not aware of the doctrine; yet its existence is crucial to creating local policies that enable women and their
90
Chapter 3
caregivers to pursue some forms of fetoscopy and shape pregnancy experiences. Although the doctrine of double effect has existed since the MiddleAges only recently, and following five years of debate, has it appeared in its contemporary formulation as accepted by the National Conference of Catholic Bishops in November 1994 (O’Rourke 1998). As noted earlier, the doctrine indicates that although killing is immoral, if a death occurs as a secondary effect—an unintended effect—of treatment to an ill or dying entity, it is acceptable. Philosopher Camillo C. Bica explains that “by focusing upon the moral significance of intention and its relevance to moral agency and responsibility, it morally distinguishes ‘accidental’ killing from murder, claiming that only the latter is prohibited” (Bica 1999:131). By invoking claims of intent of surgical outcome, a ligation procedure is separated (at least in Catholic doctrine) from the act of abortion. One of the greatest difficulties facing women consenting to ligation of a twin is coming to terms with two issues: first, that the method most likely to ensure a live baby is to tie off an umbilical cord (a symbolic artifact of pregnancy); and second, that tying off the umbilical cord is not abortion. Though no mothers I interviewed verbally equated ligation with abortion, the similarities are striking, as are the theoretical implications for women facing such moral decision making and its consequences. In an examination of grieving the wanted child, sociologist Aliza Kolker and demographer Meredith Burke explain that “Unlike other perinatal losses, in . . . [the cases of chosen abortion following identification of a fetal abnormality] parents must take active steps to bring about the death of their baby; they ‘play God’ ”(Kolker and Burke 1993:520). For women facing fetoscopy and ligation, the moral stakes involved are further problematic: choosing to save a fetus-baby also entails choosing to lose a fetus-baby. One choice cannot be made without the other, putting the women in a double bind: from one perspective they are caring, nurturing mothers; from another, they are not. The doctrine of double effect offers a simple answer to complex issues. Philosopher Nancy Davis explains that the use of the doctrine has been criticized by “secular philosophers, moralists, and legal theorists . . . [footnote],” yet even so, many secular and nonsecular theorists demon-
Fetoscopy in Cultural Context
91
strate an increasing interest in the doctrine, and much confusion surrounds its appropriate use (Davis 1984:107). Although larger debates as to the doctrine’s usefulness will no doubt continue for centuries to come (as it has since the Middle Ages), for the parameters of this work, what I witnessed in the hospital was that the doctrine of double effect theoretically alleviates the Catholic Church or hospital from any “blame” in further traumatizing grief-stricken women. Nevertheless these women are left to struggle to justify their decisions within a larger cultural context that clearly equates the tying off of an umbilical cord with “killing” a fetus. Within this milieu, women face their own moral uncertainty as they attempt to make the best decisions they can. Although consenting to ligation with the intent of saving a fetus-baby made ligation acceptable to Catholic doctrine and some patient-parents, it was rarely unproblematic and could lead to maternal blame. Many patient-parents struggled to free themselves from the implications of being seen as a person who ended a wanted pregnancy. Some, however, also found comfort in the fact that ligation was offered at a Catholic hospital. The cultural narrative that places Catholicism squarely within a pro-life doctrine helped them view, and in some cases justify, ligation as a last resort that a caring moral patient-mother could and should undergo to save at least one baby. Yet, though patient-mothers consent to fetoscopic ligation, it does not diminish the pain that accompanies the loss of a wanted pregnancy (e.g., Rapp 1999). From one perspective, the doctrine of double effect makes it easier for these women to survive their decisions; from another it offers a confusing and contradictory statement on the morality of active parental decisions in traumatic events. As noted previously, the most obvious and tenuous religious issue related to fetoscopy decision making surrounded a patient-mother’s consent to ligate an umbilical cord. Not only did Holy Names patientmothers have to pass an ethics review, in which a handful of Holy Names professionals debated the medical merits of the case, but they also had to determine what ligation philosophically entailed and how it might be related to termination. Both to make sense of the procedure and to separate it from termination, some patient-parents and medical workers used analogies such as turning off life support to a dead or dying
92
Chapter 3
fetus when considering ligation. Life support held two important ethical meanings: it let one fetus-baby “go” and at the same time used “heroic measures” to save another fetus-baby. Ligation accomplished both tasks. Whether or not patient-parents were Catholic, relationships with clergy and/or God affected some decisions over whether or not to consent to fetoscopic procedures. During our interviews many individuals indicated that they had a religion, but explained that they practiced it in their own way and did not attend religious services regularly. For others, religion was an important factor in their decisions to undergo fetoscopy, and pastors and faith communities figured prominently in their narratives. When deciding whether or not to undergo a procedure, religion entered into the process both in seeking permission (“May I?”) and, more reflectively, in seeking explanation (“Why me?”). Both these questions and their answers shaped the fetoscopy experiences by structuring patient-mother contexts, which in turn shaped their interactions with Holy Names professionals and ultimately shaped fetoscopy itself. Some patient-parents relied heavily on church and cleric acceptance before consenting to ligation and other procedures. Patient-parents who were deeply religious or practicing their faiths often met with clergy to discuss their decisions, and most found this interaction supportive. In two cases that I witnessed, out-of-town patient-parents met with local pastors of affiliated churches before undergoing surgery. These clergy came to the hospital to be with their respective church members. More likely than meeting with local religious leaders, patient-parents met with their own spiritual advisors before traveling for surgery. When I interviewed Margaret O’Brien in 1997, she was 35 years old. She had gone to Martinez in 1992 for ligation of one of her dying twins. Margaret explained that her church and pastors were supportive of her decision to undergo ligation and she thought she was lucky to have such an understanding network: I’m just lucky that I didn’t have a religious or a cultural belief that would have chastised me for that decision. You know? And there’s people that do—that are chastised, or that are frowned upon, or not supported in those decisions by people like in their church or in their community, or whatever . . . I feel pretty lucky that I had that support . . . and that’s probably why I go there to begin with, right?
Fetoscopy in Cultural Context
93
In supporting her decision to undergo fetoscopy, her church also supported the Western medical assumptions on which it is based. Returning to Ramona Emerson, the mother with two sons with cerebral palsy, she explained that an important factor in her surgery was a prayer chain that members of her home church started. According to Ramona, members of her church knew the precise time that her surgery was to start. These individuals then contacted others and told them about Ramona’s situation. Through phone calls Ramona’s prayer chain spanned her hometown and state, and even crossed countries. The plan was for everyone to begin praying for Ramona and her twins at the same time, thus offering a loud spiritual cry for assistance. In fact, her prayer chain was so immense that Ramona believes she could “feel it” and it was the prayer chain that kept her calm while others in her family were anxious. She explained: I mean we relied a lot on our prayers, our friend’s prayers, our family’s prayers, our church prayers. . . . there is a prayer chain at our church, and it’s I call you, you call them, and it is this prayer chain. It had reached to other states, other countries, and because different people that we knew were all starting these prayer chains through their different churches, and they are in different towns, different states. When I went to have my surgery, you know, I’ve said everything happened so fast. You really don’t have a lot of time to be scared. When I was at the hospital, you know, they were prepping me for surgery and everything. . . . everybody . . . [was nervous], but I wasn’t. I told my husband, because I knew that that prayers were starting at a certain time for us. I told my husband, I was like, “I can feel it. I don’t have any nervousness.” I hadn’t even been drugged yet. I couldn’t say that it was because of all of the medication that they had given me. I just felt at that time I could feel all of the prayers, everyone’s love, and I was at peace. I knew that everything was going to work out the way it was supposed to. Not necessarily the way I wanted it to, but the way that it was supposed to.
With the prayer chain, Ramona was calm and better able to accept the surgery and its potential outcomes. When patient-parent decisions and experiences were not compatible with clergy wishes, the results could be devastating. In 1997, at 44 years old, Mary-Beth Brown had suffered two miscarriages and lost an acardiac twin (the viable fetus died as well) before finally giving birth to a healthy baby. When Mary-Beth was diagnosed with her acardiac twin (one fetus lacked a heart and head; see chapter 6 for a detailed explanation), she underwent ligation. Her minister did not agree with the
94
Chapter 3
procedure and believed that it was abortion. Mary-Beth explained that the acardius would not live and that the viable fetus-baby would die if something was not done. The minister was unswayed and would not support her decision, visit her in the hospital, or offer any spiritual guidance. While Mary-Beth was firm in her convictions to undergo the procedure she remained devastated by her minister’s (in)action and lack of support. Abandonment by a God, one’s faith, or a representative of that faith, occurred not only because a woman consented to a procedure that was deemed unacceptable but also because her social network altered in such a way that she physically could not attend worship services. For example, at 26 years old, Amy Edwards underwent ligation on her acardiac twin in 1995. Following surgery she was on bedrest and unable to attend weekly Catholic Mass. After her surviving baby was born, she went to her church and asked that her baby be baptized. The priest was hesitant and observed that he had not seen her at church for some time. When she explained that she was on bedrest and could not attend services, the priest was unmoved and he told her that he would not baptize her baby until she resumed attending services. Amy described the encounter: “our monsignor at the catholic church is very old. And um, we had problems with him when we wanted to get . . . [the baby] baptized . . . . When we called to get him baptized he said, ‘I haven’t seen you’ in so many months and whatever, and we had to go to church for a couple of months before he would baptize . . . [the baby].” After attending services regularly for some time, the priest baptized her baby. The child was seven months old. Following bedrest and anxieties surrounding the health of her developing baby, Amy continued to find conflicts with her religion after the birth. Religious contexts influenced whether women would consent to surgery, and the reaction of the church or religious community following procedures shaped their experiences within their life narratives. In some cases, religious contexts offered comfort and direction; in others it created angst, and deep-rooted pain. Some feared that God had abandoned them; others grew closer to God. Some even found themselves in the tricky position of needing to believe something they had not prior to their traumatic diagnosis. As one 40-year-old agnostic father explained to me only days after one of his daughters was ligated in the
Fetoscopy in Cultural Context
95
couple’s efforts to save her sister, he prayed to a God he didn’t know existed to save the babies. If He saves them, what then? Indeed. What then? What obligation is there? Or is there an obligation? The God to which this father prayed did not save his babies. At best, God would only save one. Fetoscopy decision making can lead individuals to adopt beliefs they never imagined or accepted prior to diagnosis. It is short-sighted to dwell too much on religion as a basis or explanation for patient-parent decision making without locating it in their sociocultural context including Western, scientistic epistemologies (that also entrench fetal politics). During highly emotional fetoscopy decision making, some patient-parents stressed the usefulness of their scientific or medical backgrounds to make decisions. One couple explicitly drew from their scientific education to understand their situation (this may also be said of a handful of patient-mothers who worked in the health care industry, although the degree to which rationalistic or scientistic reasoning entered their narratives may have been less). For 34-year-old Carole Daniels and her husband, Craig, physics and mathematical probability figured prominently in their decision to undergo fetoscopy for TTTS in 1997. Drawing from a scientific metaphor of a closed, uneven pressure system existing between her dying twins, Carole identified her situation in terms of statistical probability. She explained that her decision was a rational one based on complex chemical and physical imbalances. Carole and Craig sought equations, scales, and measurements to understand the complex biological interactions of her pregnancy; unfortunately, no such detailed statistical evidence existed. Lacking this information, Carole nevertheless found it helpful to analyze her pregnancy with scientific reasoning. She explained, “Because I’m a . . . [scientist], and because everything’s an experiment to me, we have to create these . . . medical situations into an experimental base so that you can put them into a statistic.” With minimal scientific studies and immense reasoning, she believed that she and her husband could make the best decision possible. Not only did patient-parents use scientific and medical reasoning and knowledge, but many stressed the importance of their education and ability to think critically and rationally about their circumstance. Most fetoscopy patient-parents had some level of education beyond high school, and many held a college or advanced professional degree. Even
96
Chapter 3
though patient-parents often relied on physician and religious guidance, few did so blindly. As noted earlier, Mary-Beth Brown’s decision to ligate her acardius led to a rift between her and her minister. She confronted her minister, imploring him to understand how she felt about ligation, but no matter how much she tried, her minister, would not accept her decision. She said “he just couldn’t be a part of what I’d done. And it was very hurtful, because I felt like, we’re well educated people. We know what we’re doing. It’s my decision.” Although Mary-Beth was well informed and felt that ligation was her best option, her minister’s stern reaction and rejection left her feeling abandoned. In some cases, religion and scientism merged in a symbiotic relationship between a powerful caring God and an informed, faithful individual. In these cases patient-parents and others saw their role as working to make God’s miracles possible. Though many believed God could intervene in their pregnancies, He would not do so unless asked. Whether through prayer or seeking help at a fetoscopy center, some patientparents believed they had to do their work to help God do His. One of the saddest cases that I witnessed was that of Yolanda Montana, a 36year-old woman with twins suffering from TTTS. While sitting beside her bed on the night before her surgery, she explained her feelings about God’s role in giving her sick babies, “God, as much perfect as he tries to be—things just slip around the side.” As I listened to Yolanda’s tearful story in her dimly lit hospital room, it became clear: God did not decide to give her sick babies, He simply forgot to give her healthy ones. Now with fetoscopy, she had the ability to fix God’s mistake. After all, He did not mean to do this to her babies; it was an accident. In this light God was not infallible, and faithful disciples needed to help Him to help them. In 1997 I met Stephanie Bacon, a 41-year-old patient-mother, and her husband, Wayne. The Bacons were devout Protestants who were seeking treatment for their in utero sons battling TTTS. After her surgery, I met with them in her hospital room. Similar to Yolanda’s belief that God was not infallible and that she could and should work to fix His oversight, the Bacons similarly reflected on the importance for action by God’s faithful to achieve His miracles. They needed to do more than pray; they needed to help God. To illustrate their point, the couple compared their situation with a man who wanted to win the lottery:
Fetoscopy in Cultural Context
97
Stephanie: There was something on TV or an article that we both had seen—that was like this guy prayed to win the lottery for a whole year— kept praying, kept praying, kept praying but he never bought a lotto ticket. Wayne: He never won the lottery, but he never also bought a lottery ticket. Stephanie: Right. And so how I look at it is, you can pray, you can pray, and you can pray, but you can also do things to make things work in your prayer. Wayne: Or you have to— Stephanie: Right to help, you know. And God is putting those resources in front of you—that’s how I look at it—to make that happen. Traveling for surgery and undergoing a new procedure was, in some respects, embodied prayer or hope cast by desperate, faithful family. Belief systems including science and religion form the ontological context in which patient-parents and their providers negotiate fetoscopy. In this light, Catholic directives and hydrodynamics are both guiding forces in fetoscopy decision making. Each is important and serves to create order out of an otherwise chaotic situation. Which framing individual patient-parents and caregivers used varied; however, each person brought a variety of issues, frameworks, and assumptions into individual decision-making processes. Often when God, religion, or spirituality was mentioned it was not contrary to science or medicine, but was either a partner to science or even implicit to science, investigation, and medical discovery (on the intertwining of Western religion and science, see, e.g., Wertheim 1995; on religion and pregnancy loss, see, e.g., Layne 1999a). Some positioned science and religion as similar, if not complimentary to each other.13 Religious and scientific explanations and justifications are statements of social order. If an interviewee located her decision within a religious or scientific context (or a merging of the two), each serves the individual by creating a philosophical arena through which theories of how the world works were understood and thus shored up her decisions with justifications. Generally cast as antithetical, often scientific and religious explanations merged in the emotional, invisible work of fetoscopy decision making.
98
Chapter 3
Where distinct differences lie is in the Catholic doctrine of double effect. Women and their caregivers not only work through their own spiritual beliefs and emotional concerns with this doctrine, but awkwardly must also form these highly personal understandings within what may seem a very cold, unyielding doctrine that separates ligation from abortion but does not address the cultural nuances of what it means to kill a fetus-baby that all patient-mothers undergoing ligation face. While the doctrine of double effect made ligation possible at a Catholic hospital, it did not diminish the pain patient-mothers felt and, at best, only served as a religious justification to ease the grief-stricken women. Maternal Blame and Failure Losing unborn fetus-babies is a difficult experience for any parent. Often issues of guilt or other anxieties fill a patient-parent who longingly wishes to hold a baby that will never grow into the child imagined. One grieving mother confided that she had “aching arms” that would subside only if she was holding a baby, and another referred to the “ghost kicking” she continued to feel as “unfair reminders” of the baby she had lost. Particularly in Western cultures, pregnancy loss unfairly alludes to maternal responsibility (i.e., she should be able to care for her fetus-baby) or irresponsibility (i.e., she behaves in a way antithetical to caring or nurturing motherhood) during a troubled pregnancy (e.g., Rothman 1986). Just as personal responsibility for disease has increased, so has personal responsibility in childlessness (e.g., Sandelowski 1993). For those who desperately desire a baby and suffer pregnancy loss, to live within a sociocultural context that blames them is tragic. Taken together, maternal blame and maternal failure are painful experiences within a context that presupposes personal responsibility for health. Accusations or feelings of maternal blame or failure often surround loss and are problematic in some fetoscopy cases; patient-mothers may be blamed for not pursuing intervention just as they may be blamed for pursuing it. How individuals react to patient-parent decisions and pregnancy outcomes may affect whether or not or to what extent a woman who loses a fetus-baby may blame herself or see her body as failing her. Following metaphors of (re)production in which a healthy baby is the final product of a woman’s labor, it is difficult to reconcile an ill or dead baby with
Fetoscopy in Cultural Context
99
the desires and expectations of a wanting mother (e.g., Landsman 1998; Rothman 1986). Mary-Beth Brown, who ligated her acardius, critically and somewhat embarrassedly explained that she “felt like my body was betraying me.” If getting pregnant and having a baby was supposed to be so natural, why couldn’t she do it? Not only might a woman see her difficult pregnancy as a result of her body failing her, but that blame may also be heightened when she is unable or unwilling to take on patient roles or limitations to help bring the pregnancy to term. For example, when a woman’s amniotic membranes rupture (a possible side effect of fetoscopy), she may be placed on bedrest. Most patient-mothers found bedrest difficult; it is boring, frightening, and anxiety ridden. Women must leave work, stay off their feet, and in large part give up enjoyable activities (such as other childrearing) that may forge their identities. Women in this situation come head to head with the emotional, psychosocial traumas of failure, blame, and ultimately guilt: she may feel or be told that her body has failed and if she is unable to hold to a bedrest regime, she may again be blamed for causing further harm to her fetus-babies. Taken together, the loss of control over her body and pain from blame leads to considerable malignant guilt. Some patient-mothers were particularly concerned about the guilt of being linked to the death of a wanted baby by not following their doctors’ orders. When Collette Stockton’s membranes ruptured following laser surgery in 1998, she was placed on bedrest in an effort to help her membranes seal. Collette was in her mid-30s and her husband and mother made the trip to Holy Names to support her. Collette was desperate to save her struggling sons. My grief for her situation still haunts me. Perhaps more than most, her eyes continually showed a mixture of hope and fear. I was in her room when Martinez and one of his partners came to see her. Collette was anxious about the leaking amniotic fluid and feared for her babies. After some discussion, Collette told the physicians that she would willingly be catheterized if they thought that would be best; she would stay in bed and not use the bathroom or any other facility. She would remain absolutely immobile to save her sons. The physicians agreed that although bedrest was necessary, catheterization was not, and they would continue to monitor her pregnancy. Although she did eventually leave the hospital and return home, she went into preterm labor and lost her sons.
100
Chapter 3
Another patient, Helena Lawrence, who had surgery two years prior to Collette’s (in 1996), was also extremely worried that she might harm her struggling fetus-babies. After her procedure, she too experienced amniotic fluid leakage. She explained that because her pregnancy was delicate, she had to be very careful not to upset it. Bedrest was particularly important because she felt that being up and moving around would potentially contribute to the death of her fetus-babies. Although Helena wanted to cry and be upset, she feared that sobbing or hysterics might prove dangerous to her delicate womb and developing babies. During our 1999 interview, she expressed these feelings that “If I’m up and moving around . . . I am contributing to their death,” and “if I cry I’ll kill my babies.” Helena’s fears were many—walking and crying; above all she did not want to harm her fetus-babies. The difficulty was knowing what would harm them and what would not. Her immediate and pragmatic concerns were at once terrifying and paralyzing. Finally she made a deal with herself: each day she set aside a limited amount of time during which she would allow herself to cry. Although in large measure Helena had lost control of her body, she reasoned that if she could control her response to it, she might save her pregnancy. At times, however, the responsibility for fetus-baby survival fell not only on a patient-mother, but was shared by her fetus-baby. In some fetoscopy cases, women not only saw themselves as caring mothers of struggling fetus-babies, but also felt they knew the baby and reasoned their role as a caring parent was to assist their fetus-baby in his or her attempt to live (on neonatal and parental struggles within NICU experiences, see e.g., Layne 1996). Thinking of the fetus-baby as failing yet struggling to improve occurred not only among patient-mothers but also among medical staff. To illustrate, Tina May, who was 36 at the time of our 1999 interview, recalled that after her surgery to remove a rare blood clot from her baby, Martinez told her he saw her daughter practice breathing in utero. Tina seemed to find comfort in the belief that the baby was trying to avoid death. Medical observations of in utero entities may be expressed as readings of medical situations (e.g., stress on the heartbeat or bloodflow) or social states (e.g., reifying the individuality or agency of the not-yet-born fetus-baby); however, some patientparents did find consolation when medical staff assured them their
Fetoscopy in Cultural Context
101
fetus-baby was trying to live. Although some cases demonstrated a level of shared responsibility between a woman and her fetus-baby, patientmothers, as the “interface” between the fetus-baby and the outside world, bear the brunt of failure and blame accusations. In another case highlighting the importance of medical provider views, Veronica Adams, who at 35 underwent fetoscopy for TTTS in 1996, recalled a member of the medical staff urging her not to give up on her daughters: I remember a lady in his office, she came in and she was Spanish, I think. She said, “You know, we have a saying in Spanish—” and she said whatever it was, and it was basically, “don’t give up hope until it’s over—.” And she said, “I was in there with you, and I want to tell you something . . . the little one is a fighter.” She said, “We gave you the anesthetic and it was enough to put you out, and the larger baby went out right away. . . . You were out of it, the larger baby was out of it, and we had a heck of a time getting the little baby down . . . she is a fighter—don’t give up ’til it’s over.”
Veronica was desperate to save her daughters. In the interaction she described, the woman in Martinez’s office offered her empirical evidence she should not give up on her daughters. She let Veronica know what she saw and further pushed Veronica to believe in her daughters’ desire to thrive. Unfortunately, though these words may have been encouraging they may also give false hope in an emotionally traumatic situation. Ultimately Veronica lost both her daughters to the condition. Yet not all experiences with medical professionals were positive. In fact, one case in particular went beyond unprofessional and, in my view, was immoral. Jenny Galto lost her fetus-baby shortly before before her thirty-ninth birthday. She was a low-income patient-mother who underwent a new technique in an effort to seal her leaking membranes. During our interview she discussed her feeling that she might have contributed to the death of her in utero son, Timothy. According to Jenny, she needed to use the restroom; unfortunately, she was constipated and could not force a bowel movement. Later, Timothy died. Following the loss, Jenny remained in her hospital room recovering. That night a nurse whom Jenny will never forget stopped in to see her. Jenny described the encounter: Jenny: The nurses were wonderful, I never did get to thank them—they went beyond, just to try and help you through everything.
102
Chapter 3
DB: What did they do? Jenny: Except for there was one nurse. The night I lost Timothy—the night the water broke that—to this day I can still see her face—she had blonde hair and like real bright purplish-blue eye shadow—real dark on her eyes, and she knew that I had asked Dr. Martinez to let me walk to the bathroom instead of using a bed pan and after the water broke and they found out the baby died she came in the room and she told me, she said, “Well this is what you get for wanting to walk to the bathroom.” And she walked out. DB: WHAT?! Jenny: Yeah. DB: Oh my God! Jenny: That was horrible. I figure that had a lot to do with it, if I had just stayed in bed like Dr. Martinez asked I probably would have been fine. . . . I still [see] that nurse’s face, that one. Because I guess that it was—it pretty much is true, I keep saying—I do have that thought that I killed him. That was my fault. . . . I don’t know. Just as medical teams can help patient-parents through their losses they can also exacerbate them.14 Maternal blame was particularly salient in issues surrounding ligation. As noted earlier, the boundary between ligation and termination is treacherous for women to negotiate in a cultural context in which prolife and pro-choice rhetoric of abortion politics are starkly dichotomized. Historically, there has been little gray area in the abortion landscape. Assumptions of maternal care and nurturing are turned upside down when patient-parents struggle with the concept that being a caring parent to one fetus-baby requires tying off or disconnecting another wanted, albeit nearly lost fetus-baby. Unlike acardiac cases, in which women decide to end the development of a never-viable entity, women with TTTS must decide when to end development of a once viable fetus. This may increase the potential for maternal blame for ending the once-viable gestation in TTTS through ligation. Some patient-mothers and their supporters lamented that they wished “nature” would take its course, letting the dying fetus-baby simply pass away in utero thereby relieving them of the choice to ligate
Fetoscopy in Cultural Context
103
it. Unfortunately, such in utero loss may threaten the health of the other if the dead fetus bleeds into the co-twin. In 1997, Wayne Bacon, a father who had lost one of his sons to ligation due to TTTS described the painful quandary: “We were told that Baby A’s chances of living or surviving were virtually zero. Baby B’s would be virtually zero if we didn’t do something immediately. . . .” While neither he nor his wife wanted to lose a fetus-baby, the prospect of losing both because one would not live, was also unacceptable. Even when individuals agree that ligation is acceptable and wanted, they may position the procedure and its philosophical and moral meanings differently. Although the Bacons both wanted ligation, and consented to the procedure, its meaning (including potential blame) varied subtly between them. Wayne thoroughly believed they were responsible for making a decision that killed their son and Stephanie equally believed they had not: Stephanie: I still believe in the right for the woman to choose [abortion] . . . but I know that my, down underneath, my personal thing is, I can’t do that. So that it was so hard for me . . . to say, “Yes” to Baby A going and—so that Baby B can survive. Wayne: The moral issue is, and the reality of it is, we have killed a baby . . . we just assisted with what was actually already happening . . . Stephanie: I don’t look at it the way that you look at it. I do not look at it . . . that I’ve killed something. I do not look at it at all that way. In my mind it’s just that I know that this baby has died, but I don’t look at it that I’ve killed something. Wayne: . . . I think what we’re both having a hard time struggling with is there was a heartbeat . . . Stephanie: There was movement . . . Even though a patient-mother and her companion(s) may consent to or accept ligation, they may disagree on the more subtle and destructive constructions attributable to the loss. Whether patient-parents lose a twin early or later in gestation, they live with the paradox of a pregnancy ending in life and death. Christi Andrews, a high-risk OB nurse in her early 20s, told me about one
104
Chapter 3
woman who refused fetoscopy and subsequently lost a twin but carried the other to term. The woman returned to the hospital to give birth at which point Christi cared for her. Although her family and supporters were excited over the new baby, Christi’s patient was crying hysterically. Christi said, “She has this beautiful baby and she was still mourning the loss of the other. . . . [She said] ‘I’m glad it happened this way. At least I know I didn’t do anything to that baby. It died and that’s the way it was supposed to be.’ ” The pain and confusion of losing one baby and having the other survive can reek emotional havoc on the parents. As summarized in one nursing journal: “When one twin dies perinatally, mothers and fathers have a very confusing, ambivalent introduction into new parenthood. Congratulations and condolences, birth and death announcements, baptismal gowns and caskets are all a part of the first few postpartum weeks” (Swanson-Kauffman 1988:81; see also, Sychowski 1998). Parents who lose a twin lose not only a gestation, fetus, or baby, but also their outward appearance as parents of twins. Parents who have prepared for twins must now return to having only one bassinet, only one highchair, and half as many diapers. In fact, the fear of losing her fetus-babies to TTTS led one mother to leave her baby shower gifts in the trunk of her car. She could not bear to bring them into the house. What if one or both died? How could she disassemble a nursery for two? The Social Context and the Individual Together, fetal familiarity and reproductive rhetoric form a context in which women, their supporters, and larger social contexts determine what pregnancies entail and what medical actions are and are not deemed appropriate. Investigated at social and individual levels, there is clearly a fine line between how “women are” affected in general by reproductive technologies and how a particular “woman is” affected by seeing and interacting with her fetus-baby. A pregnant woman, like an in utero fetus, does not exist in “an ideological vacuum” (Stabile 1992:196); she is part of a social network that actively builds the hopes and dreams of her pregnancy with her (e.g., Layne 1999b). The rhetoric accompanying reproductive experiences with reproductive technologies such as fetoscopy exists against a legal and cultural backdrop of
Fetoscopy in Cultural Context
105
abortion debates, setting the political stage for an explosive social dilemma, especially for personal decision making within a hospital upholding Catholic doctrine and ethics. As a procedure affecting definitions of life and death, fetoscopy lies at the intersection of Western medical and scientific advances’ religious beliefs and doctrine. Both Western science and religion form the bases on which many individual decisions are made and define what individuals believe they can do within legal limitations and the parameters of personal beliefs regarding the appropriateness of specific procedures. Contextual issues including religious affiliations and scientific backgrounds entered decision making by patient-parents and caregivers alike. Patient-mothers, referring physicians, and others in the social network and fetoscopy team had to negotiate intertwining religious, spiritual, and moral beliefs as they played out regarding the treatment offered. As women make decisions about fetoscopy, they not only carry their own background assumptions regarding fetal, medical, and family acceptability, but are also part of a larger sociocultural context in which the fetus is embedded in fetal politics and often visualized as an entity distinct from the woman who carries it. With this distinction, some women may find comfort in undergoing fetoscopy while others may find their personal desires and beliefs at odds with some of the cultural narratives that affect their pregnancies. This is not an unusual situation. Any pregnant woman facing prenatal technologies and screenings must balance her own assumptions and wishful images against those of a larger culture (c.f., Firestein 1989). The remainder of this book brings this decision making into stark relief against the background assumptions of others, including the Catholic Church. While procedures such as ligation may prove confusing to individuals trying to reconcile assumptions of pro-life Catholic doctrine with fetoscopy, other procedures are not as confusing and, in fact, many procedures are clearly intended to save the life of all developing in utero entities while minimizing future illness. Such procedures include placing shunts (bladder obstruction) into ailing fetuses and cutting in utero tissues that hinder fetal growth (amniotic band syndrome). Both fetal conditions and fetoscopic treatments can be confusing and challenging to many trying to reconcile assumptions of acceptability with their
106
Chapter 3
concerns for in utero entities of both treated and nontreated pregnancies. While religion and scientism may form a generalized context in which decision making occurred, other individual attributes such as professional background and relationship to the hospital, as well as reaction of friends and family, largely impacted whether or not they would support specific developments and general fetoscopic use. Yet patient-mothers could only choose to undergo fetoscopy if the hospital supported its use. Medical and other professionals at Holy Names form an “in-house” collective that must be examined. Together they talk through cases and assist each other in making sense of the experience. Although numerous people are involved, they do not all support fetoscopy regardless of effect. Indeed, most had both positive and negative things to say about the procedures. From this mismatch of social knowledge, a growing web of interests and assumptions allowed fetoscopy to exist at Holy Names. This collective, how it developed, and who supports it are examined in the following chapter.
4 How to Create a Fetoscopy Collective: Define the Risks and Find Participants
If fetoscopy is to grow beyond the handful of limited settings in which it exists, its practitioners and supporters must convince their colleagues, patients, and the larger culture that it is a worthwhile procedure. Supporters will need to find medical allies and willing patient-mothers, to ensure others that the risks of fetoscopy are reasonable and that patientmothers and their caregivers alike should pursue the procedure. Put simply, as more individuals grow to accept the techniques, it will be easier for hospitals to institute it, physicians to offer it, and patient-mothers to consent to it. Gaining legitimacy lies partly in physically constructing fetoscopic procedures and creating the social organizations and languages to promote and secure their use (e.g., Arney 1982; Fuchs 1992; Latour 1987; Latour and Woolgar 1986; Freidson 1988). For fetoscopy to develop, individuals must create a social context in which a new procedure makes sense and identify a means of convincing others to support specific developments. At Holy Names, like-minded individuals who support fetoscopy try to convince others that their medical positions and personal beliefs are credible; at the same time, many people attempt to dissuade others from using or supporting fetoscopy by arguing that it is not worthwhile and, for a variety of reasons, should not be pursued. At Holy Names, fetoscopy supporters form a social group or “collective” that helps to normalize the procedures by supporting and recognizing the emerging techniques (Fleck 1979). Creating this visible group is important: first, it ensures a social place for fetoscopy at the hospital; and second, it helps supporters identify like-minded individuals. Yet coming together to form this collective is not always easy, nor is it necessarily enjoyable.
108
Chapter 4
Defining Risk Whether or not individuals support the emergence of fetoscopy is related in part to how they define risk. Risk may be defined in a number of ways. Referring physicians may think of risk as whether or not a procedure has an established history and recognized statistics for yielding live births. A patient-mother, on the other hand, may define the risks of fetoscopy in relation to her potential maternal blame or failure should she decide not to pursue an intervention. In all cases, patient-mothers, their referring physicians, and often their larger social networks (including families and religious institutions) must negotiate and define multiple kinds of risk before deciding whether or not a particular procedure is acceptable. To appreciate the complexities behind medical decisions, it is important to know how others influence or create a context in which consent is given and procedures delivered. Among other issues, the fetoscopy context includes individual beliefs, social norms, professional habits, and legal restrictions. With each patient-mother and procedure, these issues and countless others mix and match to form the context in which decisions are made. As examined in the previous chapters, it is misleading to consider decision making, including accepting or rejecting a technique, a solely individual matter. It is difficult (and some might argue impossible) to separate individual wishes from their broader social context (e.g., Fleck 1979; Rapp 1999; Restivo 1994). All fetoscopy decision making must be contextualized within a Western medical framework complete with cultural dichotomies, often assuming conflict framed by risky decision making. Limiting reproductive experiences to dichotomous contexts (e.g., us vs. them or pro-choice vs. pro-life) does not reflect the complex context in which individuals make difficult reproductive decisions. While dichotomous reasoning may help clarify some issues by simplifying differences in perspectives, they may also oversimplify and prevent individuals from seeing the similarities in their views or considering other approaches. On one level, dichotomies draw people together; on another, they threaten to silence potential dialogues. Those who dichotomize a fetoscopy social network into pro and con or ally and antagonist, without identifying shared hopes and concerns may overlook opportunities for recognizing
How to Create a Fetoscopy Collective
109
and building understanding. Dichotomies are easy. Dialogue is difficult. Yet the one thing that might have ensured a future for fetoscopy at Holy Names was to increase the discussions between individuals who supported the procedure and those who did not. Unfortunately, for those working at Holy Names and for those patient-mothers and their supporters who came to Holy Names for treatment, dichotomous assumptions were often a matter of course. Assumptions of right and wrong and life and death frame the Western medical context where conflict and embattlement metaphors play out on pregnant bodies and limit discussions (e.g., Martin 1987; Rothman 1986; for other options, see Fujimura 1995). Following the rise of the Western hospital and obstetrics, women’s pregnant bodies have often been viewed by the medical establishment as potentially dangerous or out-of-control environments that should be monitored and medically managed.1 At the very least, within medical practice the body must be statistically known: physicians decide what constitutes “normal” activity, growth, and measurement. Pregnancies are studied and, with varying levels of certainty, are assumed to be known. Against this backdrop, high-risk pregnancies are measured and statistics offered to help patient-mothers and their providers make informed decisions as to whether or not to pursue medical intervention. Risks are weighed and decisions are made.2 Not all fetoscopy risks can be measured as disembodied statistics; the risks of fetoscopy also encompass the invisible, emotional risks of learning about the procedure and making the decision to consent to surgery. Unfortunately, foundations in scientism and medical publishing patterns often limit the kinds of risk reported in medical journals. Although most medical journals do report the risks of physiological trauma, including morbidity and mortality for a patient-mother and her fetus-baby, generally absent are the ubiquitous sociocultural risks that inform fetoscopy decision making. Medical reports are distant and “objective” statements (sometimes ending in “discussion”) concerning a new finding for the medical procedure. They report on a medical procedure, not a medical experience. Although medical journals are helpful to some, they are at best only half the story.3 Risks such as emotional trauma and family conflict are crucial to fetoscopy decision making, yet remain absent from most medical reports.
110
Chapter 4
To address these issues, staff at Holy Names would meet with patientmothers before surgery to ensure that they had both professional medical information (e.g., informed consents and medical articles) and nonprofessional medical information (e.g., copies of newsletters explaining new procedures, guides to social services resources, and literature intended to address a lay audience). This information was assembled in a “patient packet” and patient-mothers were encouraged to take the materials, read through them, and approach Martinez, Kay, and others on the fetoscopy team with any questions before their surgeries. Depending on definitions of risk and acceptability, people make their decisions whether or not to support (i.e., develop or undergo) fetoscopy. Reflecting their beliefs surrounding physiological and sociocultural risk, some people at Holy Names supported fetoscopy, others did not, or at least not overtly, and still others were fundamentally against it. Those who supported fetoscopy included referring physicians who at times accompanied their patients on their travels to undergo procedures and nurses who believed that fetoscopy was an exciting procedure and willingly worked extra hours (without pay) to entrench the procedure at the hospital. Other medical workers’ reactions to fetoscopy were relatively noncommittal; for them fetoscopy was a new procedure the hospital offered, with a new group of patient-mothers for whom they would care if assigned such duties. The third group, who were fetoscopy antagonists (for at least some procedures, notably ligation), included physicians who would not refer patients, family members who did not support patient decisions, and Holy Names medical workers who did not believe that fetoscopy (or elements of the procedures) had a place at Holy Names or within the Catholic tradition. These categorizations are not meant as stark classifications: few individuals fully supported or rejected fetoscopy procedures; however, a spectrum of acceptability and support does exist for fetoscopic procedures, and individuals move along this spectrum. Depending on where they place themselves on this spectrum, individuals either substantiate the fledgling fetoscopy procedures at Holy Names or believed that the procedures were inappropriate and worked to limit their use and thereby development.
How to Create a Fetoscopy Collective
111
At Holy Names differently trained individuals merge their interests, hopes, and fears into a growing fetoscopy collective. Beyond physicians and nurses, social workers and chaplains likewise build the social support networks that many patient-parents need both while at Holy Names and after returning home. However, unlike the nurses and physicians, these individuals spend varying degrees of time with patientparents. In some cases patient-parents spent a great amount of time with chaplains and social workers, while others spent very little time with them. The fetoscopy collective at Holy Names is structured such that social service professionals and chaplains move in and out, as needed. In doing so, they affect patient-parent experiences and form their own beliefs about fetoscopy’s acceptability, which in turn affect their future interactions with others. Although chaplains and social services professionals both address the psychosocial content and context of patient-parents, their emphasis on theology or social affairs makes their approach and concerns different. These explicit differences may also lead patient-parents to accept help or conversations from either one or both professional groups. Some patient-parents, specifically those facing ligation or certain fetus-baby death or loss, would likely interact with social services professionals to ensure that they understood the legalities of their decisions (i.e., knowing how to dispose of the dead baby once delivered) and may begin grief counseling. Another function of the social services professionals was not only to ensure that struggling patient-parents be assisted while at Holy Names but to help link these individuals with similar services at home. Like the social service workers, chaplains at Holy Names also help create patient-parent experiences, shaping the emergent procedures and reactions to their experiences. The chaplains conduct religious practices and work with patient-parents to create a spiritual place for reflection. From bedside memorials to patient-parent reunions and remembrances, chaplains often played a strong role in molding fetoscopy experiences. Although Holy Names furnished most chaplains, some patient-parents also brought their own clergy to the hospital. As discussed in the previous chapter, religious figures and beliefs affect both patient-parent and
112
Chapter 4
caregiver experiences, ultimately leading many to accept, reject, and always question fetoscopy. Although chaplains and social workers play a part in helping both patient-parents and providers through difficult experiences and decisions, the clearest participants in developing a fetoscopy collective are the medical providers at Holy Names. Medical professionals, from nursing assistants who care for patient-mothers on the high-risk floor to anesthesiologists entrusted with maintaining the safety of a patientmother and her fetus-baby during surgery, form a large and relatively stable basis for fetoscopic interest to grow. The beginning of the collective can be traced to the acceptance of Martinez’s offer to move his practice to Holy Names and begin offering procedures. The transition was not always easy, but a collective clearly emerged. The Medical Team and Their Risky Technology As noted earlier, Martinez left a large teaching hospital to join Holy Names in 1996. This transition affected his professional life, as he was now committed to the task of developing cutting-edge medical technology in an unusual location. This was a professionally bold move on his part, and not one that many research physicians are willing to risk. In fact, one weekend during my time at the hospital I accompanied Martinez and other perinatologists to a professional conference to see how they shared their findings. As I read posters on clinical developments in perinatology, I continued to return to Martinez’s poster that explained some of his fetoscopic techniques. At one point, a physician commented that he was waiting and watching to see if Martinez could make fetoscopy work in a nonresearch setting. I wondered the same. Years later, in 2005, I learned that at least one other well-known physician practicing fetoscopy also left a teaching university for a private practice. Shortly after hearing this, I learned of Martinez’s move back to a teaching hospital. Fetoscopy can develop in both types of facilities; however, it is likely to evolve in different ways reflecting the interests of those who work in the hospitals. In all cases, the physician and research team must continually work to create a stable collective that will promote fetoscopy use if the procedures are to flourish.
How to Create a Fetoscopy Collective
113
In 1996, as a newcomer to Holy Names, Martinez needed to convince others that fetoscopy was useful and medically appropriate. Yet not everyone at Holy Names wanted to learn about fetoscopy or were supportive of its use in their traditional, care-oriented, community hospital. At Holy Names professionals participate only minimally in teaching activities and research protocols. Within a multidisciplinary teaching hospital or research organization, it is relatively easy for professionals to meet and merge into new research groups; however, at Holy Names this interaction is less obvious or possible. Nonetheless as a newly emergent procedure, fetoscopy needed the kind of research collective found at teaching hospitals to sustain it. Such a research arena was something Martinez and others worked to build and institute at Holy Names in their efforts to ensure continued growth. In 1998, I asked Martinez to explain the differences that he saw and experienced between the teaching and nonteaching environments and to elaborate on how these differences affect fetoscopy development: Martinez: The University environment provides a so-called critical mass that is not necessarily . . . in a nonteaching environment as the one we have here. So our role is, in fact, to generate that mass to put together that critical mass. To put together that group that doesn’t exist when you work in private practice. And we have, to a certain degree, accomplished that. (italics added) DB: What constitutes that critical mass? Martinez: Well, a group of sub-specialists in the different areas that have an interest in fetal therapy and that you can talk to about your ideas and they could share, you know, their ideas, concerns, views, etc. This critical mass or social collective forms the social basis of fetoscopy at Holy Names. Although an individual is enrolled in the fetoscopy collective, how much he or she supports different aspects of procedures is not always clear. It is not enough to identify individuals in the social collective without accounting for variations in their interests. Particularly important members of the collective are the perinatal partners who chose to bring Martinez to Holy Names and in so doing introduced fetoscopy to the hospital. Perinatal partners must understand, and to various degrees support, the procedures while acting as surgical
114
Chapter 4
assistants and medical providers. Assisting in cases gives them further insights to help them determine their level of support for different aspects of fetoscopy and ultimately decide to what degree they wish to professionally support procedures. Simply being partners with Martinez does not ensure that they support fetoscopy or view its existence as a boon to their practice. Their interest in cases or belief in procedural advantages or disadvantages, however, directly affect the potential position of fetoscopy at the hospital. As each partner spends more time with Martinez in and out of surgical situations they learn more about the abilities and ramifications of the procedures. These lessons, however, do not guarantee support of fetoscopy and in fact may lead to opposition from his closest colleagues. To illustrate, one partner, Wayne Peterson, viewed fetoscopy somewhat critically while recognizing its advantages and disadvantages.4 At one point during his interview he expressed reservations. In particular, he was troubled by its limited uses and the lengthy learning curve that the medical group and other supporters must tackle to deliver fetoscopy effectively. Peterson explained his wariness: I think . . . [fetoscopy] has very limited usefulness. I think its usefulness has yet to be defined. I think what we’re using it for here to some extent probably will not be done on any follow through basis. I think we’ll find that some of the things that we’re doing it for now is not really helping, maybe hurting, so in the long run, may not eventually be done. But, I think it has its merits in certain circumstances and, unfortunately, it’s something that does not benefit society as a whole. I mean because it can only really help or affect very strange problems in pregnancies. So it’s not going to have a huge impact. . . . I think it’s going to take a long time to figure out which cases won’t really work and which will because the number of patients is relatively small where it can have some impact so it’s going to take 10 years before people finally say . . . [if it can help]. That kind of thing. I think it’s still somewhat on a learning curve in terms of intervention so it’s like anything. It’s going to take years before it finally settles out to where we find that it works.
During my stay at the hospital, Peterson was a medical partner, assisted in cases, and cared for fetoscopy patient-mothers after their surgeries; however, he remained critical of its eventual usefulness and wondered if other treatments for specific conditions might prove more advantageous. He also wondered how long it might take to accumulate enough expe-
How to Create a Fetoscopy Collective
115
rience and data to discover whether or not specific uses on conditions are helpful. While also acknowledging that the use of fetoscopy was limited, another partner, Benjamin Hofstra, was more certain about its current and future usefulness, as he expressed in a 1998 interview: There are . . . diseases that you can’t diagnose by ultrasound, for example, a whole host of skin disorders which none of those can be diagnosed by ultrasound because skin is not something you can really see. But by fetoscopy . . . you can actually see the skin, you have access to be able to biopsy the baby. In the past it was a blind biopsy they . . . [did] it ultrasound guided. But . . . [with fetoscopy] you can actually look at the skin, you can make sure that you’re getting [the biopsy from a region where] . . . [it’s not] disfiguring . . . [and] you get an appropriate biopsy. You can give the parents an idea of whether the skin looks abnormal or normal. Um, so from that perspective fetoscopy, I think, adds significantly to ultrasound. Um, I think that as far as—I mean . . . fetoscopy is so related to fetal surgery sometimes that it’s hard to separate . . . just the ability to be inside the uterus and be able to alter the intrauterine environment whether it’s by—you know, if you have an acardiac twin . . . ligating cords on them . . . to protect the surviving baby. . . . The laser therapy for twin-twin . . . hasn’t been as successful as we had hoped at least to this point, but that’s a potential avenue that has merit. And, you know, for bladder . . . obstruction that’s I think a big plus. . . . So from that perspective I think it’s a very useful tool.
After I left in 1998, the practice grew significantly. Although one partner left, numerous other physicians continued to visit the site for short studies with Martinez through a variety of funded opportunities. Perhaps the greatest boon to the practice was its growth from five perinatologists in 1998 to seven in 2005, one of whom eventually came to conduct fetoscopy procedures on his own after rigorous training under Martinez. Overall, the practice grew and the number of physicians capable of conducting fetoscopy doubled, from one to two, between 1998 and 2005. A strong collective also requires nurses and other paramedical providers who support the procedures. How nurses react to fetoscopy is an important indicator of growth or stagnation in acceptance of the procedures. Without nurse support, fetoscopy procedures could not take place. All fetoscopy procedures are performed at Holy Names, and an operating room is specifically designated for its use. Although Martinez spends time at a handful of clinics around town, the nurses at Holy
116
Chapter 4
Names are the only nurses to work on fetoscopy. Nurses involved in fetoscopy at the hospital can be separated into three groups: those who are on “the team” (a limited number of primarily surgical nurses), labor and delivery nurses who care for patient-mothers immediately after surgery (generally no more than a few hours), and high-risk obstetrics (HROB) nurses who care for patient-mothers following their stay in labor and delivery, but before they are released from the hospital (generally 24–48 hours). Because of the important role nurses play, and their significant number and close interactions with patient-parents, their contribution to building a fetoscopy collective should be examined in detail. Although research in a nonresearch hospital is challenging without the organizational structures and ecologies of knowledge that support medical research (e.g., workers accepting the flexibility of experimental procedures), the nurses at Holy Names nonetheless offer fetoscopy distinct advantages (on ecologies of knowledge, e.g., Star 1995). First, they are primarily bedside nurses. They were trained in an “ethic of care” and clearly took their role as both medical nurses and compassionate providers seriously (Reverby 1987). This may stem from the fact that the nurses who commonly cared for the fetoscopy patient-mothers were not “researchers.”5 Their goal was to make the patient-mother feel better, and they cared for her physically and emotionally. Once a patient-mother was brought to the HROB floor, nurses had little organizational or political interest in fetoscopy as research. They were nurses who cared for patient-mothers undergoing fetoscopy; they were not “fetoscopy nurses.” During my time at the hospital, I found no HROB nurses who refused to work with fetoscopy patients, but there were some who were not certain they had all the information they needed to care for these patients appropriately. In these cases, some nurses approached Martinez for further information on the procedures and necessary follow-up care. Unlike the surgical nurses who were present at surgeries in which a fetus could die (e.g., ligation), most HROB nurses were far enough removed (physically and temporally) from these ethically ambiguous surgeries to develop a strong position for or against its use in the hospital. A second factor affecting fetoscopy development was that it could be exciting for the nurses. Patient-parents came from great distances to be treated with a new procedure to “save the baby.” Unlike other patients at Holy Names, the majority of fetoscopy patient-mothers came from
How to Create a Fetoscopy Collective
117
out of state. Only extremely rarely did the patient-mother come from the local community.6 Unlike more traditional and instituted procedures that were common at Holy Names, such as breast reconstruction and cesarean sections, fetoscopy offered nurses (especially operating room nurses) the opportunity to venture into relatively unknown terrain. They had not learned about fetoscopy in their nursing training. What they learned of the technique was learned “on their feet” (Schumacher 1989). This new technique challenged nurses who were in the previously comfortable or mundane situation of knowing the medical condition and therefore knowing its treatment. With fetoscopy, the condition and treatment were generally little known in professional and lay settings. Nurses not only reacted to patient-parents who were potentially confused about their conditions and treatment options, but also worked with procedures that were not completely stabilized, that is, they were constantly being altered to better approach the case at hand (e.g., Bijker, Hughes, and Pinch 1987). Nurses working with fetoscopy had to accept that they were dealing with a highly flexible and quickly changing technology. Its procedures cannot be memorized and conducted by rote. Some nurses embraced the lack of familiarity as a challenge, whereas others saw it as a threat to their tested medical knowledge. For many nurses, fetoscopy spurred dramatic changes in their professional work. For some it proved professionally and personally rewarding, for others an unwelcome development. The processes of gaining nurse support were quite diverse and often personal. Maria Jacobi, a seasoned labor and delivery nurse in her mid30s, was by her account one of the first nurses to work with fetoscopy patient-parents. In our 1998 interview, Maria explained that over time she felt fetoscopy at Holy Names has slowly gained nurse support because Martinez took the time and interest to explain his techniques and answer nurses’ questions in intimate (e.g., one on one) and formal (e.g., hospital lectures) settings. Martinez’s explanations began the process of normalizing medical procedures and entrenching fetoscopy as an acceptable reproductive procedure. Maria explained: Maria: I think initially, not really knowing what it all entailed, some people had some misgivings about the procedure. I don’t think a lot of us really understood that the alternative was to lose one or both babies
118
Chapter 4
with or without the surgery. . . . I think some people looked at it as a termination of pregnancy instead of a way of preserving a life. So I think getting over that hurdle made a difference also. DB: How did that transition occur? Maria: By him actually giving talks and explaining . . . these are the conditions, and this is why we are doing this—the types of babies that were involved in the procedure. . . . I think just having that explained and seeing his concern for the types of patients he was seeing I think that made a big difference. A big impact. DB: His concern? Maria: Right, that he wasn’t just doing this for the fame and glory of it all, but that he was concerned that these mothers were losing these children and there was something he could do about it. Alluding to Martinez’s personality and apparent compassion, Maria believed that his informal conversations with nurses on the labor and delivery floor helped him build a place for fetoscopy within the hospital in the early days after his arrival. In these informal settings, nurses are not only enrolled by the effectiveness of the procedure, but also by the personality of the physician. Like Maria, Christi Andrews, an HROB nurse in her late 20s, also pointed to Martinez’s style or approach in explaining his procedures: Christi: At one point there . . . [were] a lot of nurses, including myself, who said, “I don’t feel comfortable doing this—I don’t know what I’m doing—I don’t know what the procedure is, and if I don’t know what the procedure is, I . . . [won’t be able to] answer questions for these people the way I should be able to. . . . And so he did an in-service [educational class] on it. DB: To high-risk? Christi: Yeah. DB: . . . what happened? Christi: . . . they scheduled a day . . . he provided lunch, and we all went in and he brought a couple of video tapes . . . he just talked to us about it. DB: Oh really?
How to Create a Fetoscopy Collective
119
Christi: Yeah. DB: Where was this? Christi: On our floor, room 324. DB: Did he answer questions? Christi: He answered questions, he told us what was important. . . . Equally important to his supplying the information nurses requested is the location in which it was delivered. Martinez explained the procedure with a private tutorial on their floor. Another HROB nurse, Claire Mathews, a younger nurse in her early 20s, was more critical and wished there had been more education and possibly a video that nurses could watch on their own time. Although she believed that most nurses had a general sense of the procedures, she felt that still more education was needed. Claire stressed that nurses acted as translators to patient-parents and as such needed a solid understanding of the procedures to be effective in their role. As demonstrated previously, a cornerstone to nursing practice is an “obligation to care” (Reverby 1987:1). Most nurses at Holy Names were well aware of their professional obligations to care for patient-mothers and enjoyed filling this role. One way that Martinez appeared to enroll nurses was to present fetoscopy within a similar or complementary ethic. During interviews and informal conversations, I was frequently met with explanations, pronouncements, and testimonials lauding Martinez’s sympathy for his patients-mothers. At the same time, I was often informed that such concern was not always the case with other physicians. Moira MacGregor, an outgoing surgical nurse with an equally outrageous sense of humor, was particularly intrigued by Martinez’s unhidden emotions. In her mid-40s, Moira had worked with many surgeons during her career. When I asked her about Martinez, she described his approach and behavior: Moira: And he’s almost like a kid when it goes real well, he just gets so excited. And it’s just like he wants to just bust out and just start running up and down the halls going, “Yes! It was a good, good case, and, ha!” You know? Wow! You know how he is. DB: Yes.
120
Chapter 4
Moira: Oh, he LOVES it, it’s like, he’s just like a kid, and I’ve conquered something, you know? So I guess that’s what doctors feel like when, or whoever comes up with the serums for like cancer and AIDS and things like that. It’s like, YEAH! Finally found it, you know? Shortly later, Moira continued to reflect on the not-so-positive experiences: DB: What about, then, cases that don’t go so well? Moira: Oh, God, I, I have seen him, he was almost in tears. . . . it was bone crushing to see him and to watch him be so totally upset. You want to cry too. . . . [In one case we got a] morale group together, and we’d go into the lounge and we’d talk about the case and get it off our shoulders. And we’d cry. And we’d talk about, you know, that we felt really bad for the patient and that we lost the child, and, yeah, it’s tough. It’s tough to lose one. Gosh, you’re going in there with the hopes that this is going to work. . . . And so when we get together on the really bad ones, on the really bad cases, and we talk about it. Together Martinez and fetoscopy nurses not only create procedures, but in some cases make sense out of the successes and traumas.7 As they form their narratives, they strengthen the collective by building its history and culture. Returning to HROB nurse Christi Andrews, like Moira, she not only commented on Martinez’s concern for his patient-mothers, but intriguingly also compared his actions and emotions to her own: [At night] he’ll usually call before we call him. He’s like a mother hen. He’ll come in, in the middle of the night. I work until 10:30 [at night]. He’ll have a patient he did earlier in the day, and he’ll show up at 10:00 o’clock at night with a bedside sono[gram]—because he wants to know—in shorts and a T-shirt. You know he just kind of appears. I think he sits at home and starts thinking about it and can’t stand it—has to get in the car and drive there. DB: That’s very possible, I think. Christi: . . . there’s been patients I’ve done that with, so I’m sure he does.
How to Create a Fetoscopy Collective
121
In seeing him as a caregiver or mother hen, some nurses were able to blur the boundary between Martinez as the physician and themselves as nurses. Whether a nurse saw Martinez as more nurselike in parts of his caregiving, or simply friendlier than other physicians, the comment nurses frequently offered when asked about Martinez was, He’s just a nice guy. The apparent breakdown of certain hierarchies, professional distances, and gendered roles certainly assisted Martinez in enrolling nurses. This is not to say that Martinez relinquished his decision-making or medical authority. As Christi also critically pointed out, it’s in his best interest to build social relationships with the nurses: Christi: He’s a very good doctor, he’s a very nice man, he’s very pleasant to work with, but when it comes to these patients, he knows they’re delicate, you know they’re delicate, you need to do things his way. And when he calls at any hour to . . . [ask] what’s going on with this person you need to know what’s going on with that person. It’s like that with any patient, but especially these patients. And because he is good to us up there [on HROB]—I really like to help him out as much as I can. DB: What do you mean he’s good to you? Christi: He’s very nice to us. There’s a lot of doctors that aren’t very nice. He’s very nice to us . . . there’s not many doctors that know us very personally. Dr. Martinez could probably tell you what part of town we all live in, you know? (laughter) I’m just trying to think of something personal that he knows—or so and so, how many children she has, or if I’m married . . . because he talks to us as a friend. . . . and if I had any questions—and it doesn’t have to be one of his patients . . . he will more than explain to me what’s going on. . . . DB: That’s not a norm necessarily, with the physicians? Christi: No, no they don’t have time for that. He just builds a nice rapport with all of us. That’s probably the way to say it. He’s got a nice rapport. DB: That’s a good relationship it would seem . . . if you’re up there working with those patients. Christi: Yeah. I think he’s in an ideal situation. I bend over backwards for him.
122
Chapter 4
She continued to reflect on Martinez’s situation and confided: He’s a smart man, maybe he’s thinking ahead? I’m going to have these patients here—I better build a nice rapport with these people and they, in turn, will help me out. Maybe it’s just good planning. But I think it’s just his personality.
Some members of the fetoscopy surgical team also suggested that these characteristics made him someone for whom they would work especially hard and, implicitly, someone with whom they would build a collective and substantiate the legitimacy of fetoscopic procedures at Holy Names and abroad. As Maria noted, many labor and delivery nurses were confused by fetoscopy in the beginning and not certain if it had a place at Holy Names because of some of its similarities with abortion. Much of this confusion can be linked directly to the fact that most who work at the hospital as caregivers (not administrators) appeared unaware of the doctrine of double effect or its use in Catholic decision making. Moira confirmed that this was also the case in the operating room and, like Maria, explained that the earlier tensions were beginning to subside. I asked why, and she explained: Moira: He has given some talks, and see he’s invited people to come and . . . he’s given written materials out . . . anybody is free to look at his consents. And in his consents they are so verbatim what he is going to do. And why he’s doing it and how much . . . of a chance the baby will survive and how much the baby won’t, and . . . his consents are up for grabs for anyone back there in the surgery department . . . [to] read it. DB: Do people know that, do you think? Moira: Uh hum. That, [and] Kay’s told them several times, look, this is the way it is. And some of the . . . [members of another department] have gotten better about wanting to help out. Before they were like, oh! I don’t want to have anything to do with that. . . . And some of the other people have kind of calmed their heels and thought . . . maybe this is something that’s not so bad. It’s because we’re out there talking. And then Kay has done a lot of education. And so has Dr. M. He’s, he’s talked to them. You know. He’s given them every opportunity to find out what he’s done. Like many nurses who support fetoscopy, Moira strongly believes that with access to Martinez, his team, and their statistics, other nurses will ultimately learn about fetoscopy and support its use.8
How to Create a Fetoscopy Collective
123
Because nurses may feel more comfortable approaching each other with criticisms (and because Martinez may not be available), nurses already enrolled in the fetoscopy collective must be able to answer the other nurses’ questions and respond to criticisms. Since nurses may feel a bit freer to critique one another (as opposed to critiquing the physician), they act as informational resources to each other and barometers of fetoscopy acceptability. As Martinez enrolled nurses through informal discussions, so too did fetoscopy nurses. Yet not all discussions of fetoscopy were dialogue-oriented. For example, at one point I overheard two Holy Names employees verbally attack Kay for her involvement in the fetoscopy program. They wondered how she could be involved in such an unethical activity: how could she kill babies? Kay retorted that she supports fetoscopy because it saves babies, not because it kills babies. The heated discussion ended with little to show for it. In some cases, conflicts ensue and worldviews appear irreconcilable. Fetoscopy is ethically ambiguous for some Holy Names employees, and it promotes impassioned confrontations. During our 1997 interview, Kay remembered the early cases: A lot of people think [that during surgery] we’re just tying off the cord and killing a baby. A perfect example of this, and I’ll never forget this, we took a patient in the recovery room and the recovery room nurse looked at me and [asked] “Which baby did you kill?” It wasn’t even a ligation procedure. The patient is coming out of anesthesia and for somebody to say that, it’s pretty much a shock. Yeah, as they scrape me off the floor! And I said, “No . . . we have two babies here.”
Kay explained that the patient had undergone laser surgery for twin-totwin transfusion syndrome in the hope of giving both fetuses a chance to survive. With time and familiarity, tensions have somewhat abated; however, some nurses remain guarded and are considered by many as antagonists to fetoscopy use and, in some cases, may see themselves as antagonists as well (or at least saviors to fetuses who may be killed). As noted earlier, most nurses already enrolled in fetoscopy development explain that those who are not enrolled or those who are outspoken critics of the procedures simply do not understand it. These nurses believe that education should quell such differences. While conducting my ethnography, I met nurses who would roll their eyes, shake their heads, or start arguing the ethics of fetoscopy when they realized that I was exploring its development and patient-mother
124
Chapter 4
experiences. Contrary to some of the assumptions held by fetoscopy nurses, who believed that other nurses would “come around” with education and support fetoscopy, many contrary views were articulated with compelling evidence. To illustrate, one nurse, Gloria Ashford, a woman in her mid-40s, was well known as an outspoken critic of fetoscopy. I was somewhat shocked and extremely pleased when she agreed to be interviewed for my project. When I went to the nurses’ desk to find her for our interview, I tried to be subtle and not let others know that I was looking for an interviewee, and more, that it was Gloria (in honesty, I was expecting to sit down to an interview in which pro-life rhetoric and “baby killing” accusations might occur). When I approached the surgery desk many people were gathered around, including Kay. I planned on catching Gloria’s eye and walk past the desk in the hope that she would follow me to what in my mind was a rather clandestine interview. As she saw me she asked if I was ready to conduct her interview. Heads turned, mouths dropped, and I nodded. Throughout her interview, it was clear that Gloria spent many hours thinking about her position on fetoscopy issues. Far from making vehement accusations, she explained that she had lost a child years ago and still lives with the grief. She so misses her child that she finds it too difficult to be with patient-mothers who “choose” to lose one. She explained that it was particularly important for her to be able to sympathize with a patient-mother to care for her, and in cases of ligation, she could not bring herself to support the patient-mother’s decision. Gloria did not want to be responsible for caring for a patient-mother physically if she could not support her emotionally. Although her position may not be accepted within some assumptions of medical professionalism requiring that she offer the best care she can for any patient-mother, her recognition of her limitations and their effect on her ability to care for a patient-mother are well taken. As demonstrated by Gloria, it is short-sighted to think that a lack of support implies incomplete information; in fact, lack of support might result from being well informed, but within a different moral and historical context. Gloria’s beliefs would not allow her to accept fetoscopy; quite the contrary, they formed a context in which fetoscopy was an unacceptable procedure regardless of patient-mother or physi-
How to Create a Fetoscopy Collective
125
cian intent. Gloria’s position, and those of others like her, shows that education of nonsupporters is not easy nor does it necessarily imply that all who are educated or informed will arrive at the same conclusions. Although nurse support waxes and wanes, depending on the procedure, some nurses are particularly supportive of fetoscopic procedures and have a firm hand in shaping patient-parent and provider experiences. One of the strongest and most solidified groups at Holy Names is the “fetoscopy [surgical] team,” a term often used by Martinez and recognized by nurse team members. Simply calling the surgical group a “team” contributes to the solidification of fetoscopy at the hospital. The team relies on shared understanding and fluid cooperation. As a team they share a goal (i.e., successful surgery) and work together to attain it. Moira continually stressed the importance of good communication on the team to ensure surgical success. Among other examples, Moira explained what I observed on many occasions: Martinez frequently drew pictures to illustrate an upcoming case and would describe in detail the procedure that he anticipated conducting. Visuals such as quick doodles on empty surgical boxes were invaluable tools because they let the observer see what Martinez had in mind, and then reconstruct it in his or her own mind until it made sense. This was particularly important because some procedures were not yet well known and could change during surgery as complications arose. Following Martinez’s explanations and doodles, the team was better prepared to work as a unit. The ability to actively create procedures was particularly exciting for Moira, who appreciated the opportunity to learn along with the physician and the rest of the fetoscopy team: I think it’s kind of interesting that we’re like at ground level here, and we’re learning as he’s learning. And it’s fun . . . because you stand there, sometimes, and you try to figure out, well how can he get that in there better? How can he get a better scope? And at what angle could he [use it]? We’ve devised all kinds of little things, you know. Well, how can we lasso that cord so that . . . we can hold it long enough so that he can stick a laser in there. And so, everybody works together as a team, it’s really neat. You know, to try and figure out together, how are we going to get . . . that thing [to work].
By taking the initiative in cases such as altering the lights and other visuals or speaking up when they have an idea, Moira and others on the
126
Chapter 4
team become further strengthened in their belief that fetoscopy can and should be a part of perinatal medicine at the hospital. They become invested in the success of fetoscopy and, in some cases, emotionally linked to its continued development. The importance of the fetoscopy collective being, in part, a research group in which individual contributions were valued, cannot be overstated. At one point, I wrote in my field notes: It is increasingly clear that this fetoscopy team is a research group. The members seem happiest when they know the big picture. Also [when] they are given credit for their creativity and ingenuity. Each case offers new variables and the nurses are the ones who respond by finding tools and sticking them together in new ways. During the “fetoscopy team” meeting [one nurse] made a point to [another] that she and the others would tinker with the scopes, trocars etc. to find a way to make something work. The large degree of freedom and creativity may be very new for some of these nurses. Kay commented to one [nurse] that she knows of few people who are in their 50s who enjoy getting up and going to work. She does. I wonder if she’s excited about being a nurse . . . or a research assistant. Perhaps a bit of . . . [both].
Thinking aloud, immediate action, and credit for ingenuity merge within fetoscopy procedures as team members create social experiences and medical techniques. Like Martinez’s perinatal partners, however, some nurses enrolled in the fetoscopy collective remain critical of their work and question its ethical, moral, and social outcomes. One member of the fetoscopy surgical team, Barbara Marble, a surgical nurse in her late 20s, explained that although she supports fetoscopy, the procedures cause her to think critically about life and death issues. Her concern and confusions regarding her culpability in delivering immoral or unethical medical treatments are apparent in her interview: Barbara: Well, I think it’s really—I think it’s nice that he can go in there and save a baby or two babies or however many babies. And I don’t know, now I just kind of wonder. I don’t know if I should say it. I just kind of wonder— DB: Only say what you’re comfortable saying. Barbara: If it’s really a good idea to interfere and all that. You know what I mean? I don’t know if it’s meant to be for that baby to keep going when he can actually—you know what I’m saying? He can save that
How to Create a Fetoscopy Collective
127
baby if he intervenes, but I mean, maybe it wasn’t supposed to [live]. Maybe it’s like nature’s way of getting rid of the weak, you know what I’m saying? I mean I don’t—I mean I think it’s neat and I don’t have any problem with that at all. It is a great thing. Because I’m not a mother and I don’t know what it feels like. You know what I mean? I think it’s neat. It is. It’s great that he’s around to help people. Later she added: Like I said, it doesn’t bother me and I think it’s great, but it just makes me wonder about passing on the weak genes. You know? I think there’s a reason for that happening. The ligations—I don’t . . . have a problem with that either. I mean if he can save one, then that’s good. . . . I don’t have a problem with it at all.
Although Barbara claims not to have a problem with fetoscopy, her switching back and forth within her answer illuminates the difficult ethical terrain on which fetoscopy is built and its workers struggle to make sense of its use. She is not alone in her mixed emotions. Explicit Patient-Mother/Parent Contexts Although all members of the fetoscopy collective are affected by their personal contexts, patient-parents are particularly important facets as they are the primary decisionmakers, and compared to the medical professionals at Holy Names, they have little time to learn about the procedures but will live with their decisions and outcomes for the rest of their lives. Of all people in the collective, patient-parents have the least amount of time to form their beliefs regarding fetoscopy efficacy, but in many ways have the most to lose. While patient-mothers and their partner commonly arrive at the hospital alone, at home or nonapparent members of their social network were nonetheless constant factors in their decision-making processes and fetoscopic procedures. Religious affiliations, advice from family members, and personal histories and memories (e.g., education and previous reproductive encounters) formed the invisible context in which a patient-mother consented to surgery and through which she and her social network became part of the growing fetoscopy collective. Family decision making regarding family building was often emotional and could be both helpful and painful. Some patient-mothers mentioned
128
Chapter 4
family member input and support as important factors in their decisions to undergo a procedure. In some cases, family members were highly valued for their insights, experiences, and financial assistance in making these decisions. In other cases, patient-mothers said they did not want or welcome assistance from family who did not or could not understand their situation. In still other cases, wanted or unwanted, some family members were unwilling to enter into the sticky decision-making process. As Deanna White, a patient-mother deciding whether or not to undergo fetoscopy, explained, everybody knew what was going on but I think everybody was scared to have any input because they knew it was something . . . [where] there was so much [at stake]. If you did it and he lived and had this horrible life. I mean, there was just too much to look at, so everybody was scared to have any input. They were scared to help us make the decision, or push us to make any sort of decision . . . they knew it had to be our decision because we were going to have to live with whatever we decided. So I think they were there for support but didn’t offer any advice.
Deanna was 31 at the time of her surgery in the summer of 1995. It is difficult to imagine such a young woman being faced with these decisions, nevertheless it happened. Another patient-mother, Patricia Leung, was in her mid-30s when she underwent surgery for TTTS in the fall of 1997. Patricia echoed Deanna’s concerns about keeping the family at bay in fetoscopy decision making. Patricia was the first patient-mother that I interviewed. I was unprepared for the poignancy of her position on risks and fetoscopy decision making. Patricia was clear that it was her and her partner’s decision to undergo fetoscopy. No one else could make the decision. After completing her laser surgery in 1997, she explained, “Ultimately the parents can be the ones who can decide and weigh the factors of what risks are and what’s best for their quality of life . . . [ultimately I was at] the point I wished I was dead. I mean the decisions and weighing everything,” she continued, “we just gotta go with our heart and our instincts.” The angst that made her feel death might be better than the decisions involved in fetoscopy was heart-wrenching. I was pained by her experience. Little did I know that similar feelings would continually arise in patient-mother interviews throughout my research. Fetoscopy procedures and the social experiences that surround them have the power to bring people together and tear them apart. The emo-
How to Create a Fetoscopy Collective
129
tional decisions that go into consenting to fetoscopic surgery continue to shape families after the procedures. Winnie Royal, who at 35 lost her unborn son to a bladder obstruction, believed that the attempt to save their unborn son strengthened her marriage; on the other hand, Veronica Adams felt that undergoing fetoscopy for TTTS, separated her from family members who, though sympathetic, could not share or understand her maternal trauma. To illustrate her separateness, pain, and despair after losing her daughters to TTTS, Veronica compared her experience to that of a mother cat whose kittens were given away: The feeling was just—I mean it was just—I can’t even describe it. You know, the most emptiest feeling you can imagine. And I remembered when I was a kid having a cat that had kittens, and when the kittens got old enough to give away, we had to give all the kittens away and I remember the mother cat just roaming around the house, you know, crying—the terrible meowing—crying sound just looking and looking, and searching for these kittens and you know, I felt the same way. I came home and I just walked, and looked and you know it was like—a yearning, I guess feeling and ahh—[begins crying a bit] and everyday since then, I mean you go on with your life, but every day since then, is a struggle.
Veronica could find commonalties and shared pain with another mother who lost her babies, but not with her family—they simply couldn’t feel the pain like she could. Whether through conferences, publications, or personal interactions, referring physicians also build a fetoscopy collective by sending their patient-mothers for treatment. Referring physicians had a range of views on fetoscopy. Fran Ford was 35
