Prenatal diagnosis of fetal abnormalities : managing catastrophic psychic pain in a subsequent pregnancy

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Prenatal diagnosis of fetal abnormalities : managing catastrophic psychic pain in a subsequent pregnancy
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vii, 166 leaves : ill. ; 29 cm.
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Rillstone, Pamela B
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Subjects / Keywords:
Embryonic and Fetal Development   ( mesh )
Maternal-Fetal Relations -- psychology   ( mesh )
Pregnant Women -- psychology   ( mesh )
Abnormalities -- psychology   ( mesh )
Department of Nursing thesis, Ph.D   ( lcsh )
Dissertations, Academic -- College of Nursing -- UF   ( lcsh )
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Thesis (Ph.D.)--University of Florida, 1999.
Bibliography:
Includes bibliographical references (leaves 157-165).
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Also available online.
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Typescript.
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Vita.
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by Pamela B. Rillstone.

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Table of Contents
    Title Page
        Page i
        Page ii
    Acknowledgement
        Page iii
    Table of Contents
        Page iv
        Page v
        Page vi
    Abstract
        Page vii
        Page viii
    Chapter 1. Introduction
        Page 1
        Page 2
        Page 3
        Page 4
        Page 5
        Page 6
        Page 7
        Page 8
        Page 9
    Chapter 2. Review of literature
        Page 10
        Page 11
        Page 12
        Page 13
        Page 14
        Page 15
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        Page 17
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    Chapter 3. Method
        Page 34
        Page 35
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    Chapter 4. Catastrophic psychic pain: The basic social psychological problem
        Page 53
        Page 54
        Page 55
        Page 56
        Page 57
        Page 58
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        Page 84
        Page 85
        Page 86
        Page 87
        Page 88
        Page 89
        Page 90
    Chapter 5. Managing catastrophic psychic pain
        Page 91
        Page 92
        Page 93
        Page 94
        Page 95
        Page 96
        Page 97
        Page 98
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        Page 100
        Page 101
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        Page 133
        Page 134
        Page 135
        Page 136
        Page 137
        Page 138
    Chapter 6. Summary and recommendations
        Page 139
        Page 140
        Page 141
        Page 142
        Page 143
        Page 144
        Page 145
    Appendix A. Interview questions
        Page 146
        Page 147
        Page 148
    Appendix B. Informed consent
        Page 149
        Page 150
        Page 151
    Appendix C. Demographic form
        Page 152
    Appendix D. Physician letter
        Page 153
    Appendix E. Participant letter
        Page 154
    Appendix F. IRB approval
        Page 155
    Appendix G. IRB addendum approval
        Page 156
    References
        Page 157
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    Biographical sketch
        Page 166
Full Text








PRENATAL DIAGNOSIS OF FETAL ABNORMALITIES:
MANAGING CATASTROPHIC PSYCHIC PAIN IN A SUBSEQUENT PREGNANCY
















By

PAMELA B. RILLSTONE.
















A DISSERTATION PRESENTED TO THE GRADUATE SCHOOL OF THE UNIVERSITY OF FLORIDA IN PARTIAL FULFILLMENT
OF TILE REQUIREMENTS FOR THE DEGREE OF
DOCTOR OF PHILOSOPHY UNIVERSITY OF FLORIDA 1999





























Copyright 1999 by

Pamela B. Rillstone













ACKNOWLEDGMENTS

I would like to acknowledge many individuals for their continuous support and encouragement during the course of this research. I especially want to thank my husband, Jere, and my children-Chris, Amy, and Ryan-for their loving support and for the many sacrifices they made. I also want to thank my mother, Dolores Merrick, my in-laws, Alice and the late Herbert Rillstone, who never failed to encourage me when they could, and my aunt and uncle, Bobbie Jean and Richard Winkler, for their continued faith and assistance. Many other family members and friends, too numerous to mention by name, provided an unending source of encouragement and prayer, especially Jacki Davis, Suzy Ludwig, and Kathy and Ed Leonard.

I began a process when I entered the doctoral program that culminates in this

dissertation that would not have been possible without the assistance of the members of my supervisory committee-Drs. Felix Berardo, Karolyn Godbey, Sally Hutchinson, James Wagner, and Marie Visscher. I particularly thank Dr. Hutchinson for her neverending guidance, encouragement, and strict adherence to scholarly standards.

Last, but by no means least, I would like to thank each of the parent participants who were so graciously willing to share their most intimate stories making this study possible, and the professionals who were willing to share their time and experiences.









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TABLE OF CONTENTS

pAge

ACKNOWLEDGMENTS .............................................................. iii

A B ST R A C T .............................................................................. vii

CHAPTERS

1 INTRODUCTION .............................................................. I

Purpose of Study ................................................................ 4
Theoretical Framework for Grounded Theory Research ................... 4
Significance for Nursing ........................................................ 9

2 REVIEW OF LITERATURE .................................................. 10

Prenatal Testing .................................................................. 10
Influences in Pregnancy Termination for Fetal Abnormalities ............ 12
Attitudes Towards Termination for Fetal Abnormalities ................... 15
D isclosure Issues ................................................................. 16
Termination as the Right Decision ............................................. 17
C hoice .............................................................................. 18
Effects of Prenatal Diagnosis and Subsequent Choice
on Children and Families ............................................... 19
Psychological Sequelae of the Choice ......................................... 21
Follow -up ......................................................................... 26
Subsequent Pregnancies ......................................................... 29
Sum m ary ........................................................................... 33

3 M ETH O D ......................................................................... 34

Research Approach ............................................................... 34
Sample Selection ......................................................... 35
Sample Demographics .................................................. 37
Data Collection ........................................................... 43
D ata A nalysis ............................................................ 43
Maintaining Rigor ................................................................ 47
Ethical Issues ..................................................................... 50




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4 CATASTROPHIC PSYCHIC PAIN:
THE BASIC SOCIAL PSYCHOLOGICAL PROBLEM...... 53

Introduction .................................................................... 53
The D iagnosis .................................................................. 54
Diagnostic Consequences .................................................... 57
Unexpected Pain ...................................................... 57
Intense Pain ........................................................... 59
Never-Ending Pain .................................................... 62
Painful Decisions .............................................................. 64
To Terminate or Not to Terminate ................................. 64
Timing of the Decision .............................................. 66
Decision Rationales .................................................. 67
Decision on Type of Termination .................................. 70
Decision Reflections ................................................. 76
Consequences of Catastrophic Psychic Pain ............................... 77
Loss of Innocence ..................................................... 77
D evastation ............................................................ 79
Changes in Spousal Relationships ................................. 80
Fear of H ope .......................................................... 82
Isolation ................................................................ 83
Stigm a .................................................................. 84
Sum m ary ........................................................................ 89

5 MANAGING CATASTROPHIC PSYCI-HC PAIN ...................... 91

Emotional Armor and Going Forward ....................................... 92
Desire for Future Pregnancy ......................................... 93
Playing the Odds ...................................................... 96
A Different Child ...................................................... 98
Limiting Disclosure ............................................................ 99
Secrets .................................................................. 99
Disclosing the Subsequent Pregnancy .............................. 103
What Pregnancy is This? ............................................. 106
Suspending Emotions .......................................................... 108
Gathering Information ................................................ 112
Accelerating the Diagnosis ........................................... 115
Waiting Hurdles ........................................................ 118
Changing Expectations ................................................ 123
Increased Attachment to Health Care Professionals and Others ......... 125
Increased Attachment to the "Wise .. ................................ 125
Increased Attachment to the "Own7 ................................ 130
Social Structural Issues ........................................................ 133
Sum m ary ........................................................................ 138





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6 SUMMARY AND RECOMMENDATIONS ............................. 139

Summary ........................................................................ 139
Recommendations for Future Research .................................... 14")
Recommendations for Practice .............................................. 143

APPENDICES

A INTERVIEW QUESTIONS ................................................. 146

B INFORMED CONSENT ..................................................... 149

C DEMOGRAPHIC FORM .................................................... 152

D PHYSICIAN LETTER ........................................................ 153

E PARTICIPANT LETTER .................................................... 154

F IRB APPROVAL .............................................................. 155

G IRB ADDENDUM APPROVAL ............................................ 156

REFERENCES ........................................................................... 157

BIOGRAPI-11CAL SKETCH .......................................................... 166

























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Abstract of Dissertation Presented to the Graduate School
of the University of Florida in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy

PRENATAL DIAGNOSIS OF FETAL ABNORMALITIES: MANAGING CATASTROPHIC PSYCHIC PAIN IN A SUBSEQUENT PREGNANCY By

Pamela B. Rillstone

August 1999

Chairman: Sally A. Hutchinson
Major Department: Nursing

Rapidly developing technological advances in the reproductive arena lead to prenatal diagnoses of fetal abnormalities forcing parents to make life and death decisions for their unborn children. The purpose of this study was to discover: a) the basic social psychological problem experienced by parents faced with a pregnancy subsequent to a pregnancy in which they had to choose to terminate or not to terminate following the diagnosis of a fetal abnormality, and b) the basic social psychological processes these parents used to address this problem. Symbolic interactionism provided the theoretical framework while grounded theory was the method used for this qualitative study. Two professionals and 22 parents were interviewed during a subsequent pregnancy. Catastrophic psychic pain was the basic social psychological problem identified. This pervasive pain began with the diagnosis of a fetal abnormality in the previous pregnancy. The pain was unexpected, intense, and never-ending. Catastrophic psychic pain resulted from the overwhelming loss these parents endured.


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The pain had consequences for the parents that included loss of innocence, feelings of devastation and isolation, changes in spousal relationships, fear of hope, and stigma. With time, parents began to move forward; they thought about a subsequent pregnancy and became pregnant. In order to move forward, parents had to manage their catastrophic psychic pain. Four major sub-processes describe how parents managed their pain; they developed emotional armor, limited disclosure, suspended emotions, and increased attachment to health care professionals and others on the Internet and in support groups who shared similar experiences. Social structural issues involving the health care delivery system affected parents' pain management. Health care professionals need to examine how they support and care for these parents to avoid causing further pain. These agonized, vulnerable, and underserved parents need compassion and understanding. With the knowledge gained through this research, professionals can better understand and guide these parents through their painful subsequent pregnancy.






















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CHAPTER 1
INTRODUCTION

Advances in reproductive technology may be occurring at a much more rapid pace than many parents in our society are prepared for psychologically. Prenatal testing for some inherited diseases or birth defects became available in the late 1960s and early 1970s. This testing was made possible by the development of laboratory methods that enable cells to grow from amniotic fluid. Further advances in obstetrical procedures including chorionic villus sampling done in the first trimester of pregnancy, amniocentesis done in the second trimester, fetal blood sampling, ultrasound, major strides in DNA analysis and disease gene identification, and inutero therapy or surgery have not only expanded reproductive choices, but also created often difficult challenges for women, couples and their families (Roberts, 1997). The prenatal discovery of birth defects and inherited diseases influences the way women and parents make decisions about childbearing (Blumberg, Golbus & Hanson, 1975). In fact, Blumberg et al. suggested that families may pay a psychiatric price for this newly available information. As technologies continue to advance, the risk of psychological trauma to these families, including a concern about their future pregnancies, presents a significant clinical problem.

S andelowski (19 8 8) suggested that a case of conflicting paradigms exists between nursing and reproductive technology. She cautioned that reproductive technology is not only changing the experience of maternity, but also the




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longstanding bond between pregnant women and nurses. The nurse's role as "empathic toucher" (Sandelowski, p. 43), the laying on of hands to comfort and treat, is being minimized by this technology. The nurse is becoming more like the physician, touching the patient primarily to obtain information (Sandelowski). In the past, parents were unaware of fetal complications until the birth of their baby or some time during the first year of life (Matthews, 1990). With the advent of diagnostic testing during pregnancy and the legalization of abortion, parents are now faced with making life and death decisions for their unborn child.

The subject of prenatal testing and the subsequent influences on childbearing has been explored and studied since the early 1 970s in literature in nursing, social work, psychology, medicine, and genetics (Alberman, Kani & Stanwell-Smith, 1984; Becker, Glinski & Laxova, 1984; Black & Furlong, 1984a, 1984b; Humfeld, Wiadimiroff & Passchier, 1994; Mueller, 1990). Many of these studies are limited in scope and sample size. It was difficult to compare and contrast these studies because they focussed on different research problems and frequently lack common measures. Volumes of studies concerning termination of pregnancies for psychosocial reasons (reasons other than fetal abnormalities) exist, but the literature review for this study focussed on choices concerning "selective terminations" and their subsequent sequelae. "Selective terminations" were usually much desired pregnancies that were terminated for prenatally diagnosed fetal anomalies. The impact on these families began with the diagnosis of the fetal abnormality and continued on long after a decision was made to terminate or not to terminate the pregnancy.








Many researchers described what families experienced following a positive

diagnosis of fetal abnormalities and subsequently having to decide whether or not to terminate their pregnancy. These descriptors included such wording as "emotional upheaval" (Adler & Kushnick, 1982, p. 94), "the worst decision of my lifetime" (Van Putte, 1988, p. 17), "emotionally devastating" (Green, 1992, p. 57), "physically and emotionally painful" (Mueller, 1990, p. 286) "isolating" (Suslak, Scherer & Rodriguez, 1995, p. 169), "complex and emotionally challenging" (Bryar, 1997, p. 560), and "far more painful or traumatic than anticipated" (Kenyon, Hackett & Campbell, 19 8 8, p. 9 8). White-Varn Mourik, Connor and Ferguson-Smith (1992), while looking at psychosocial sequelae of second-trimester terminations of pregnancy for fetal abnormalities concluded that "it remains an emotionally traumatic major life event for both the father and the mother" (p. 202). Blumberg et al. (1975) commented that "even when selective abortion is accepted as the only alternative, and preferable to the birth of a defective child, the responsibility of making the decision to abort may prove to be an uncomfortable burden for the parents" (p. 805). Uncomfortable burden seems to be an understatement of what parents actually experience during and following this profound life event. What is the effect of this technology and the decisions parents are asked to make on their future childbearing? Does this prenatal information and decisions parents make impact how they manage subsequent pregnancies? Is this experience the same for both the man and the woman? The current literature on prenatal testing and pregnancy outcome does not adequately answer these questions. Parental concerns





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during a pregnancy subsequent to having to choose to terminate or not to terminate a previous pregnancy following detection of a fetal abnormality remain unstudied.

Purpose of the Study

The purpose of this grounded theory study was to answer the following questions: (a) What is the basic social psychological problem faced by parents during a pregnancy subsequent to a pregnancy in which they had to choose to terminate or not to terminate following the diagnosis of a fetal abnormality? (b) What is the basic social process used by these parents to address this basic social problem? (c) What are the phases and their properties, the strategies and consequences of this basic social psychological process'? and (d) What are the social structural processes that impact these parents?

Theoretical Framework for Grounded Theory Research

This study aimed to develop a substantive grounded theory about parents

experiencing a pregnancy subsequent to a pregnancy in which they had to choose to terminate or not to terminate following the diagnosis of a fetal abnormality. Research methods were linked to certain perspectives on a philosophy of science (Hutchinson, 1993). The social psychological theory of symbolic interactionismwhich grew out of the Chicago school of sociology provided this philosophical foundation for grounded theory (Hutchinson; Robrecht, 1995; Schwandt, 1994). The theory of symbolic interactionism, described by George Herbert Mead (1964) and Herbert Blumer (19 69), searches to portray and understand the process of meaning making (Schwandt) and "posits that humans act and interact on the basis of symbols which have meaning and value for the actors" (Stem, Allen & Moxley,





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1982, p. 203). Symbolic interactionismn can be thought of as a lens for understanding human behavior (Becker, 1993).

Symbolic interactionism, according to Blumer (1969), is based on three basic premises. The first of these is that human beings act toward things based on the meanings that the things have for them (p. 2). Things include anything that the person may note in his or her world such as physical objects, other human beings, institutions, guiding ideals, activities of others and any situation persons encounter in their daily lives. Blumer believed that contemporary social and psychological science took meaning for granted and pushed it aside as unimportant or regarded it as a neutral link between various factors responsible for individual behavior. In this type of explanation, the meanings of things for the persons who are acting are either swallowed up or bypassed in the factors used to account for their behavior. Symbolic interactionism posits that the meaning things have for individuals is central in its own right (Blumer). "To ignore the meaning of the things toward which people act is seen as falsifying the behavior under study" (Blumer, p. 3).

The second premise is that the meaning of such things arises out of, or is derived from, the social interaction that one has with fellow human beings. This premise refers to the source of meaning. Traditional ways in which meaning has been accounted for view meaning as being intrinsic to the thing that has it, or as arising out of psychological elements in the person. In symbolic interactionism, meaning is seen as arising in the process of interaction between human beings, Thus, meaning is seen by social interactionists as a social product, as a creation that





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is formed in and through the defining activities of persons as they interact (Blumer, 1969).

The final premise is "that these meanings are handled in, and modified

through, an interpretative process used by the person in dealing with the things he encounters" (Blumer, 1969, p. 2). The use of meanings by a human being in his action involves "a process of interpretation.... Interpretation should not be regarded as a mere automatic application of established meanings but as a formative process in which meanings are used and revised as instruments for the guidance and formation of action" (Blumer, p. 5). Blumer suggested meanings play a role in action through a process of self-interaction. Stern et al. (1982) believed that everyone's lifetime study is learning the meaning and value of these interactional symbols. It is through the meaning and value that these interactional symbols have for the individual that he/she tries to interpret their world and the actors who interact with them (Stem et al.).

The symbolic interactionist theory is organized around three central concepts including the self, the world and social action (Bowers, 1989). According to this theory, the human being having a self simply means that the person is an object to himself, perceiving himself, having conceptions of, communicating with, and acting towards himself The self is not static but continually evolving. The process of selfinteraction puts the person over against his world instead of merely in it (Blumer, 1969). It "requires him to meet and handle his world through a defining process instead of merely responding to it, and forces him to construct his action instead of merely releasing it" (Blumer, p. 64).








The world is the second concept that is formational to symbolic

interactionism theory. Persons live in an environment or world of objects, and their activities are formed around these objects (Blumer, 1969). Objects, for the symbolic interactionist, are everything that can be designated to the self or reflected on by the self. Professionalism and anxiety are no less objects than hats and chairs. No inherent meaning is given to an object. Objects are defined by the meaning they have for individuals and how individuals act toward them. The meaning of an object may vary from one individual to another, from one social context to another and over time. However, objects are not static things and evolve over time just as the self does (Bowers, 1989). Bowers believed that "our ability to interact effectively depends on our ability to understand the objects being designated as the designator understands them"' (p. 41).

Symbols, including both nonverbal and verbal gestures, also designate

objects in our social world. Individuals interact in a meaningful or predictable way by designating symbols that are shared by those around them. As individuals receive these symbols from others, they adjust their own actions accordingly. Therefore, individual action, or social action, the third foundational concept in symbolic interactionism, is always contextual (Bowers, 1989; Blumer, 1969). For the symbolic interactionist, social action consists of the person and collective activities of people engaging in social interaction. These activities make up the ongoing social life of a human group, whether the group is a family or a nation. Social action takes place within the process of social interaction.





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In order to analyze or treat social action, the researcher must observe the

process by which it is constructed. The investigator must trace the formation of the action by seeing the situation through the actors' eyes (Blumer, 1969). That is, observing what the actor takes into account and how he/she interprets this, "noting the alternative kinds of acts that are mapped out in advance, and seeking to follow the interpretation that led to the selection and execution of one of these prefigured acts" (Blumer, p. 56).

Symbolic interactionism was an ideal framework to discover the basic social psychological problem experienced by parents faced with a pregnancy subsequent to a pregnancy in which they had to choose to terminate or not to terminate following the diagnosis of a fetal abnormality, and for uncovering the basic social psychological processes that were used by these parents as they attempted to address this problem. The symbolic interactionist's perspective provided the underlying theoretical framework for this dissertation because I was interested in how the participants experience their identified problem, what the meaning was for the participant. In this case, the focus was on the parents' perspectives and social interactions surrounding their past pregnancy, decisions made to terminate or not to terminate following the diagnosis of a fetal abnormality, and their subsequent pregnancy. It allowed me a way to enter the world of the participant and understand it from the parents' perspective.

Barney Glaser and Anselm Strauss gave researchers a method developed for the purpose of studying social phenomena from the symbolic interactionist





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perspective (Bowers, 1989; Glaser & Strauss, 1967). This method, called grounded theory (Glaser & Strauss), will be discussed in more detail in Chapter 3.

Significance for Nursing

As long as technologies continue to advance in the realm of prenatal testing, while at the same time treatments and cures for the conditions diagnosed lag far behind, parents will continue to be faced with heart wrenching decisions about their unborn children. How do these decisions affect their future pregnancies? How do nurses and other health care professionals support these parents through this very difficult and emotional time? Qualitative research recognizes that human realities are complex and focuses on the human experience through a holistic approach. Careful attention is given to the contexts of human behavior with a high level of researcher involvement through in-depth interviews with the participants. A description of individuals living through events is produced by the data obtained (Boyd, 1993).

By the use of symbolic interactionism through the grounded theory method an attempt was made to enter the world of the parents investigated to gain a better understanding of their perception of their situation. With this understanding of these parents' experiences, I identified the needs they shared with me and developed appropriate strategies to assist other nurses and health care professionals to better support these parents through this very difficult experience.













CHAPTER 2
REVIEW OF LITERATURE

We live in a fast paced society where new technologies are developed on a regular basis. Certainly, this is the case for advances in technologies in the reproductive arena. Through the use of prenatal testing, parents are given the opportunityt" to discover if the fetus the woman is carrying has any diagnosable abnormalities. With this information, parents are now being asked to make life and death decisions for their unborn child. The information is just enough to make the diagnosis, but unfortunately not enough to treat or cure the majority of the problems. Such knowledge drastically changes the parents' outlook on their current pregnancy, as well as any future pregnancies. In this chapter, prenatal testing, influences on and attitudes toward pregnancy termination for fetal abnormalities, disclosure issues, termination as the right decision, effects of prenatal diagnosis and subsequent choice on children and families, psychological sequelae of the choice, follow-up and subsequent pregnancies are discussed.

Prenatal Testing

For most parents prenatal testing was agreed to not to discover something

wrong with their baby, but for reassurance that everything was all right and possibly the bonus of discovering the baby's sex (Green, 1992; Sandelowski & Jones, 1996). In fact, women in Sandelowski's qualitative study on choosing to terminate or not to terminate, used words such as 'routine' or 'regular' to describe tests performed



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during 'routine' prenatal visits for 'normal' pregnancies (p. 356). Evans et al. (1989) predicted that first trimester genetic testing would be the norm for the 1990s even though this has not proven to be the case. Although the majority of testing does reassure parents, one to five percent of the time fetal abnormalities are detected (Jones, et al., 1984; Raybur & LaFerla, 1982; Roberts, 1997; Timothy & Harris, 1986; and Zimmer, Avraham, Sujoy, Goldstein & Brohshtein, 1997).

Blumberg et al. (1975) suggested that families might not be adequately

prepared for these abnormal results. Families must be made aware that one of the risks of amniocentesis (and other prenatal tests) is the possibility of the diagnosis of a fetal abnormality, even though cognitive awareness of this risk is not equivalent to emotional acceptance (Blumberg et al.). Even when the possibility of a fetal abnormality is discussed prior to the amniocentesis procedure, most couples deny this possibility and when a positive diagnosis occurs, they react as if they are hearing for the first time that abnormalities can exist (Jones et al., 1984). Cox et al. (1987) studied the psychological impact of diagnostic ultrasound and found that providing increased feedback during the ultrasound scan significantly lowered both anxiety and emotional experiences. Unfortunately, this research excluded 'high-risk' pregnancies and failed to discuss differences, if any, noted when the results were less than normal. Sandelowski and Jones (1996) reported that both obtaining too little or not the right information, as well as obtaining too much information, left women feeling uninformed.

Other risks involved with amniocentesis or chorionic villus sampling

included fetal loss or abortion as a result of the procedure itself or the possibility of





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misdiagnosis and termination of healthy pregnancies (Squire, Nauth, Ridler, Sutton & Timberlake, 1982). Squire et al. reported on the outcome of pregnancy in 2036 women following the use of amniocentesis. There were 53 terminations following detection of fetal abnormalities and 65 spontaneous fetal losses not noted as related to the amniocentesis. Three normal pregnancies were terminated following the misdiagnosis of neural tube defects. No information was reported on the experiences of these families.

Influences in Pregnancy Termination for Fetal Abnormalities

Who chooses termination over continuation of pregnancy when a fetal

abnormality is diagnosed? The literature revealed conflicting information. Several investigators reported that most women whose fetus was diagnosed with a genetic abnormality chose to terminate (Kokler & Burke, 1993; Rayburn & LaFerla, 1982). Rothman (1986) agreed that the overwhelming majority chose termination but added that this might be, in part, because those who would choose not to terminate avoid having the tests and facing the decision. In contrast, Matthews (1990) interviewed 20 women prenatally diagnosed with major fetal malformations. Eighteen of these women chose not to terminate their pregnancies. In the majority of cases, pregnancies terminated for fetal abnormalities are much desired or wanted pregnancies (Donnai, Charles & Harris, 1981; Jones et al., 1984; Kenyon et al., 1988).

Several authors reported on the influence of different types of prenatal diagnosis and time of diagnosis in pregnancy on the decision to terminate or not (Drugan et al., 1990; Evans, M., Pryde, Evans, W. & Johnson, 1993; Pryde et al.,





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1992; Verp, Bombard, Simpson & Elias, 1988). Conflicting findings exist. Drugan et al. found no difference in decisions to terminate or not in parents whose fetuses were diagnosed with chromosome abnormalities by chorionic viluis sampling (first trimester diagnosis) and amniocentesis (second trimester diagnosis). They also reported that most patients who had abnormal results on ultrasound were in the amniocentesis group, and most of these chose to discontinue their pregnancy. This would have one believe that ultrasound findings were not made early enough for first semester diagnosis by chorionic villus sampling and once made and confirmed, even in second trimester, parents most often chose termination for chromosome abnormalities. Pryde et al. and Evans et al. also observed that fetal gestational age did not seem to make a difference in the decision to terminate or continue the pregnancy. On the contrary, Verp et al. concluded that parents are more inclined to terminate all pregnancies with chromosome abnormalities diagnosed in the first trimester, but when diagnosed in the second trimester, parents were able to differentiate among the severity of chromosome disorders and did not uniformly choose to terminate the pregnancy for chromosome abnormalities. According to Verp et al., gestational age did make a difference in the decision to terminate or not to terminate the pregnancy when a fetal chromosome abnormality was diagnosed.

Other researchers have reported varying influences in parents' decisions to terminate or continue their pregnancy (Drugan et al., 1990; Evans et al., 1993; Holmes-Siedle, Ryynanen & Lindenbaum, 1987; Marteau, 1989; Meryash, 1992; Pryde et al., 1992; Sell, Roghmann, Doherty, 1978; Tannebaumn, Perlis & Hsu, 1986; Verp et al., 1988). The severity of the abnormality or the fetal/neonatal outcome was





14

a major determinant for many parents. The more severe the diagnosed abnormality, the more likely the parents were to choose termination (Drugan et al.; Pryde et al.; Tannebaum et al.; Verp et al.). Drugan et al. noted that to a lesser extent visualization by ultrasound of the anomalies was also a major influence. Mothers who were given an ambiguous prognosis were more prone to continue the pregnancy "hoping for the best" (Evans et al., p. 79; Pryde et al.).

The presentation of the information and how it was framed for the parents impacted their subsequent decisions (Marteau, 1989). Holmes-Siedle et al. (1987) observed that when post-amniocentesis counseling was given by an obstetrician, more parents chose to terminate than when counseled by a geneticist. The majority of women referred for prenatal testing tended to be older than 35 years of age (Adler & Kushnick, 1982, Bryar, 1997; Holmes-Siedle et al.,). The fmdings on the influence of age were conflicting. Holmes-Siedle et al. reported couples who chose to continue their pregnancies tended to be older and had more previous children. In contrast, Pryde et al. (1992) found no significant difference in patient age, gravity or parity in relation to their decision to terminate. Tannebaum et al. (1986) also observed that patient age was not significant in the decision. Bryar found the "wantedness" (p. 560) of the pregnancy to be a greater determinant than age. In a survey of female relatives of individuals with fragile-X syndrome, a cause of mental retardation, Meryash (1992) noted that those women willing to consider termination placed greater importance on family-focused factors than those who would not terminate.





15


Ethnic background and religious affiliation were reported by several authors to be an influence (Tannebaum et al., 1986; Zimmer et al., 1997). According to Zimmer et al., religious people almost never terminate. They reported that one reason for the high rate of termination found in their study may have been in the secular population. Bryar (1997) noted that religion had a profound effect on her participants' feelings on abortion, making their choice more difficult. Meryash and Abuelo (19 8 8) surveyed women who were at-risk for having children with the fragile-X syndrome about their attitudes toward prenatal testing and termination of pregnancy. These investigators observed that Catholics were less likely to consider termination than non-Catholics, although 56 per cent of their subjects were unsure as to what they would do. These women may or may not change their decision when faced with the actual choice.

Attitudes Towards Termination for Fetal Abnormalities

Attitudes of varying populations were examined internationally by several authors (Drake, Reid & Marteau, 1996; Faden et al., 1987; Mao & Wertz, 1997). Drake et al. looked at attitudes towards terminations for fetal abnormalities in Germany, Portugal and the United Kingdom and found that lay persons were less likely than professionals to choose termination for fetal abnormalities. Portuguese respondents were most likely to choose pregnancy termination with German respondents being least likely. An interesting question raised in this study concerned the way information was presented and the effect this had on parental decisions. That is, whether such differences in parental decisions result from "health professionals presenting termination of pregnancy in a way that is not concordant





16


with patients' value systems" (Drake, et al., p. 134). The overwhelming majority of 490 women surveyed by Faden et al. believed pregnancy termination for fetal anomalies was justified. These investigators noted a sharp rise in the number who would opt to have the termination if the probability of the fetus affected with a neural tube defect rose from 95 % to 100 %.

In China, Mao and Wertz (1997) surveyed 402 geneticists. The

overwhelming majority of geneticists agreed that they would terminate in the first or second trimester for 25 of the 26 conditions surveyed. Only about one-fifth would terminate for the 26' condition which was undesired gender. Some studies observed that attitudes opposed to termination for birth defect reduction were less prevalent with greater knowledge about prenatal screening (Sell, Roghmann, & Doherty, 1978) and more education (Meryash, 1992). Attitude studies provide us with information about how varied groups perceive these highly emotional issues. Such studies give us an idea about how specific health care professional groups would oppose or support parents' decisions.

Disclosure Issues

Many parents found it difficult to tell others, not only of their decision to have prenatal testing, but also about choosing to terminate their pregnancy for fetal abnormalities (Green, 1992; Gregg, 1993; Hodge, 1989; Suslak et al., 1995). Suslak et al. observed a support group for couples who chose pregnancy termination after prenatal diagnosis. They learned that "The decision not to tell came from both a fear of being judged for having committed a 'sin' and from the sense of shame and guilt at having produced an abnormal child" (p. 174). Women in a qualitative study





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believed others would assume they would choose pregnancy termination in the case of fetal abnormalities and judge them for making such a decision (Gregg). Hodge felt, from her own personal experience, that keeping the pregnancy a secret until having the amniocentesis results would have cut her and her husband off from support when the outcome they feared did occur. She found that the sympathy and support of others helped them to survive. Bryar (1997) described the experience of creating two stories to explain the pregnancy loss to others as "living a he" (P. 564). The three women in Bryar's study told others they had a miscarriage in an effort to avoid dealing with second guessing or judgements from individuals who hadn't lived through the same experience.

Termination as the Right Decision

By far, the overwhelming majority of women and couples who chose to

terminate felt they had made the right decision and would do it again, if necessary (Alder & Kushnick, 1982; Blumberg, 1975; Jones et al., 1984; Kenyon et al., 1988; Kolker & Burke, 1993; Suslak et al., 1995; Van Putte, 1988). Suslak et al. who observed a support group over 4 years with 142 clients noted most (no percentage given) couples felt termination was the right decision. Of the 18 women in Van Putte's study, 15 chose termination and 3 did not. Only I woman in this study said that she would not do it again. Adler and Kushnick studied 12 families and found that 11 of the 12 would repeat the process if they had to choose again, Of the 15 families Blumberg studied, 77 % would opt for an amniocentesis in a future pregnancy and repeat the termination, if necessary. Ninety-three percent of the 14 women and 12 men in Jones' et al. study felt termination was necessary. All of the





is

20 couples Kenyon et al. reported on felt it was Mcult, but the right decision. There was reluctance to terminate the pregnancy, and most couples wished they had never been faced with this extremely difficult decision, but expressed no doubt about the rightness of the decision (Jones et al.; Kenyon et al.; Suslak et al.).

Choice

Yes, we can sit here and weigh tragedies and say that the tragedy of a baby's
death is less than the tragedy of disability. Or the other way around. And
whichever tragedy one chooses as the lesser is the one you get. The chosen
tragedy. . Whatever a woman chooses, she often experiences it as 'her
only choice'. (Rothman, 1986, p. 180)

Deaim (1998) wrote her personal story about her termination for fetal abnormalities for a lay publication. She said,

It is something you know in your mind, but in your heart ... I can no longer accept that it is all as simple as a choice I get to make because it is my body.
With choice comes responsibility. This was not some nonviable collection of
cells and tissue inside of me. It was a little boy who deserved to be
considered. (p. 13 1)

In Sandelowski and Jones' (1996) qualitative, descriptive study, they interviewed 12 couples and 3 women and listened to their individual stories of choosing to terminate or not after learning that their baby was impaired. The results of this study suggested that the participants "had often 'backed into', as opposed to having chosen or refused, prenatal testing" (p. 353). The authors discerned five emplotments of choice that varied depending upon where participants located moral agency for their pregnancy outcomes. Individuals who placed moral agency in someone or something outside of "themselves removed from themselves some of the pain of bearing the responsibility for choice" (p. 359). These emplotments interpreted how the participants' narratives can be summarized as "nature's choice,





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disowned choice, choice lost, close choice and choice found" (p. 353). Those whose fetuses were lethally-impaired and who had the option to terminate told a 'nature's choice' story, while a 'choice lost' story was told by participants whose fetuses were viable, but did not have the option to terminate. For participants whose fetuses were viable and had the option to terminate, a 'disowned choice' story was told by those who continued their pregnancies, while a 'close choice' story was told by those who terminated. Participants told a 'choice lost' and a 'choice found' story when faced with lethally-impaired fetuses and given no option to terminate. Important implications for clinical intervention and psychological wellbeing may be related to the differences in emplotments of choice. Some of the burden of choosing seemed to be removed by those who constructed their situation as not their own but as nature's choice.

Effects of Prenatal Diagnosis and Subsequent Choice on Children and Families

Limited research exists in the area of effects of prenatal diagnosis and

subsequent choice on children and families. Parents look for professional guidance, especially with young children, about how they might tell them about the situation without causing psychological harm (Suslak et al., 1995). Green (1992), from her own personal account, found that being straightforward with children was the best. Forrest, Standish, and Baum (19 82) examined support after perinatal death and observed children's grief reactions to be brief, except where the mothers remained severely affected for many months. The only other studies found relating to the effects on children were conducted by Black and Furlong (19 84a, 19 84b) who looked at prenatal diagnosis and experiences within families with children over four





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years of age. These investigators found that about two-thirds of the parents told at least one child about the testing. The children tended to be very interested and had low to moderate anxiety levels. Extreme or more worrisome reactions were the exception with a few children expressing concern of possible harm to the mother. Several preschool children were frightened by overly graphic descriptions of the procedure itself. Concerns voiced by the mothers were that the children might be frightened and feel less secure about their own imperfections. However, mothers reported few adverse reactions to prenatal testing by their offspring. Black and Furlong (19 84b) surveyed the experiences of 112 families and concluded that families appeared to be adapting well to the new technology of prenatal testing. Results also suggested that all age children should be involved in the experience of prenatal testing, and that health care professionals need to be alert to the worries and questions that do arise in some families (Black & Furlong, 1984b). If parents do not do well, then children will not do well either.

The effects on marital relationships is another area in which there is limited literature and inconsistent results. Blumberg (1975) identified that the stresses related to prenatal diagnosis and pregnancy termination produced undesirable marital consequences. The separation rate of 12 % of couples was reported as being due to increased irritation, a lack of communication or intolerance (VAfite Van-Mourik et al., 1992). Eight of the 10 couples who separated were reunited by the time of the interviews which occurred 2 years after the event. Kenyon et al. (1988) found that women reported that their partners gave them the most support, although they felt difficulties were exaggerated by the added stress of this event. Black(1989)





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observed, even as long as 6 months following the loss, that some women had difficulty communicating feelings about the loss with their partners. Black also observed that their decline in quality and frequency of sexual activity was another topic women found difficult to discuss with their partners. In another study (Elder & Laurence, 199 1), poorer resolution of the grief reaction was associated with poorly perceived support from their partners. In stark contrast, other authors (Green, 1992; Jones et al., 1984) identified that marital relationships became closer as a result of this experience.

Psychological Sequelae of the Choice

The vast majority of research reported on psychological sequelae of couples, especially women who were faced with the decision to terminate or continue a pregnancy when diagnosed prenatally with fetal abnormalities. Most authors found that these parents experienced a grief reaction similar to parents who have a spontaneous perinatal loss (Iles & Gath, 1993; Kenyon et al., 1988; Lloyd & Laurence, 1985; Zeanah, Dailey, Rosenblatt, & Saller, 1993). The process of mourning is difficult because there is often no grave, no photograph and no focus for the grief (Kenyon et al.; Lloyd & Laurence; Zeanah, et al.).

Iles and Gath (1993) interviewed 2 groups of women following pregnancy termination at 4 weeks, 6 months and 12 months. One group chose termination for fetal abnormalities and the second group had no choice, but terminated for intrauterine fetal death. The psychiatric morbidity rate for those who had terminations was 4 to 5 times higher than the general population at 4 weeks. The rate was based on the Present State Examination and Index of Definition representing increasing





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severity of psychiatric disturbance. Morbidity had fallen off by 6 months although the grief symptoms persisted. Lloyd and Laurence (1985) found that 22 of 48 participants were still symptomatic for grief at 6 months post pregnancy termination, with 5 requiring psychiatric support. Blumberg (1975) reported on 13 families and found the incidence of depressive symptoms to be 92 % among the women and 82 % for the men. When compared to pregnancy terminations for medicosocial reasons, Lloyd and Laurence (1985) and Dagg (1991) reported more distress following a termination for fetal abnormalities. Termination of pregnancy for medicosocial reasons are frequently referred to as abortions and included almost any reason to terminate except fetal anomalies.

In a retrospective study, White-Van-Mourik et al. (1992) investigated psychological sequelae of a second-trimester pregnancy termination for fetal abnormality. Participants included 84 women and 68 spouses who completed questionnaires 2 years following their terminations. All had emotional distress with 40 % of the women and 24 % of the men reporting coping problems lasting beyond I year. Factors found to influence these parents coming to terms with the loss included parental immaturity (< 21 years of age), lack of supporting relationships, inability to communicate needs, secondary infertility, and a self-perceived deep-rooted lack of self-esteem before the pregnancy. The authors identified this loss of self-esteem in 3 areas, biological, moral and social. Zolese and Blacker (1992) suggested that the poorer psychological outcome, which was not specifically defined, may be understood in terms of bereavement felt for a wanted baby and/or guilt for having produced an abnormal child. In contrast, Black (1989) reported significant





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improvements over the first 6 months post termination. She found that those with the greatest mood disturbances in the first month showed greater distress months later. Jones et al. (19 84) also found that few participants expressed any long-term deleterious effects. Mueller (1990) reported on nursing care in the hospital and suggested that bereavement began before hospital admission and continued throughout their stay.

Bryar (1997) used a phenomenological approach to examine the experiences of women undergoing second-trimester pregnancy termination for fetal anomalies. A noted limitation in her research was her sample of only three women. Interviews were conducted 4 to 6 weeks after their losses. She described these women's experiences as "one day you're pregnant and one day you're not" (Bryar, p. 562). Her results summarized the transition from being a pregnant woman with dreams and hopes for her baby and the future to a woman experiencing a loss of innocence. Two intertwined processes were used to describe this transition, entitled "The Hardest Thing We Ever Did" and "Saying Hello and Goodbye" (Bryar, p. 562). In contrast to other studies, she did not observe depression and pathologic grief in her sample. These women all experienced supportive spouses and felt the experience brought them closer in their relationships.

In another phenomenological study, Matthews (1990) examined responses of 20 pregnant women who knew their baby had a major malformation. Eighteen of the 20 women chose to continue their pregnancy, although all of the infants except one died shortly before the delivery or within the first few days of life. From the responses of these 20 women, Matthews developed the Expectancy of Loss model





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consisting of 6 phases. These phases occurred over a period of time beginning with suspecting a problem and continuing until after the birth. Phases included uncertainty, the suspecting phase, verification, the fact finding phase, preparation, the waiting game, reconfirmation, or revalidation, reparation, the readjusting phase, and resiliency, future hope.

Women reported their major source of grief as being the loss of the dream of motherhood and of a normal child. For men, the issue was related more to the loss of a normal child (Suslak et al., 1995). Suslak et al. also suggested that men suffered doubly. They not only lose their child but feel they "lose their wife as they knew her" (Suslak et al., p. 175) before this event. Whether women lose their husbands as they knew them, also was not addressed in this study.

Several authors observed anger and guilt in relation to the pregnancy

termination (Donnai et al., 1981; Green, 1992; Iles & Gath, 1993; Kenyon et al., 1988). Kenyon et al. reported that anger was the hardest emotion for women to understand and cope with when experiencing this type of loss. One author observed that 31 % of the women still felt angry and guilty about the termination 13 months later. White Van-Mourik et al. (1992) reported feelings of shame and failure in 61 % of women and 32 % of the men in their study. The discussion on secrecy earlier in this paper also related to the guilt some parents seem to experience (Gregg, 1993; Suslak et al., 1995). Many parents expressed feelings of guilt even when they recognized termination was appropriate (Donnai et al.). Rothman (1986) chose to use the word responsibility and not guilt, observing "Some women express feelings of guilt, but all of them express 'the inescapable sense of deep responsibility'."





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(p. 182). Kolker and Burke (1993) found, after interviewing a genetic counselor who leads a support group for parents who make the choice to terminate an abnormal pregnancy, that a support group is a good place for parents to put some of their guilt feelings to rest by talking about them Suslak et al. (1995) reported on recurrent themes and observations noted in FATE (Feelings After the Termination Experience), a support group for couples who had a pregnancy termination following an abnormal fetal diagnosis. These authors, based on 4 years of observations in FATE, believed this bereaved group of parents had "a profoundly positive emotional experience" and were able to use this experience "to help understand their feelings and move through their grieving process" (Suslak et al., p. 177).

Several authors identified other experiences that were helpful (Jones et al., 1984; Kenyon et al., 1988; Kolker & Burke, 1993; Lloyd & Laurence, 1985; White, 1998). Kolker and Burke surveyed 120 persons, and conducted 12 interviews with genetic counselors, 24 in-depth interviews with women who had undergone prenatal diagnosis and subsequent termination for fetal abnormalities. They recommended that it would be helpful if parents were given candid information and encouraged to bond with their baby before they let go. Jones et al., in their interviews of 14 women and 12 men who terminated their pregnancies for fetal abnormalities, found that most of those who did not see their baby wished they had. Kenyon et al. reported that parents who did see their baby found it important to confirm the presence of the abnormality and to reassure themselves that the baby was not otherwise deformed. Eleven of 48 participants, in a study by Lloyd and Laurence, named their baby, usually secretly, but found this to be helpful in their grief process. Two parents out





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of 20 buried their infant, while the other 16 reported wishing they had some sort of ceremony (Kenyon et al.). Lloyd and Laurence observed that some parents would have liked a burial or some other more formal recognition of the death. Many parents expressed the desire to meet other parents who had had a similar experience (Jones et al.; Kenyon et al.).

Follow-up

The literature on counseling explored different types of counseling with

multiple foci. "Grief cannot be prevented but may be shortened if coping strategies are discussed in the context of skilled preparatory counselling" (White-Van-Mourik et al., 1992, p. 203). The need for counseling and support is well documented (Blumberg et al., 1975; Donnai et al., 19 8 1; Elder & Laurence, 199 1; Forrest et al. 1982; Jones et al., 1984). Hagar, Valley, Rayburn, and Carey (1997) found that women undergoing second-trimester induction of labor for major fetal abnormalities using intravaginal PGE2 had longer labors and required a greater amount of the drug than terminations for fetal death. These authors found it helpful to counsel women that the labor is longer and the amount of the drug required is greater prior to the termination. Forrest et al. and Elder et al. identified a decrease in adverse emotional consequences and appreciably shortened bereavement reaction with improved follow-up and counseling. Genetic counseling was indicated for all couples who experienced a positive diagnosis of a fetal abnormality (Lloyd & Laurence, 1985) although not all couples were offered this option (Kenyon et al., 1988). Tishler (1981) described genetic counseling as being akin to informing someone that they are going to experience a loss. Several authors identified that the best time to give





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genetic counseling for future pregnancies is around 3 months post-termination as it seemed counter-productive before this time (Elder & Laurence, 1991; Lloyd & Laurence). Elder and Laurence found, after interviewing 69 women in South Wales who had terminated a pregnancy for fetal abnormalities, that parents are usually still too upset to take in adequate information to consider the future objectively when genetically counseled sooner than 3 months. Supportive counseling on the other hand should begin as soon as possible and continued post-termination (Blumberg; Donna et al; Jones et a; Lloyd & Laurence;). Explanations and information should be offered clearly and concisely in a direct, simple, and compassionate manner allowing parents to make logical and informed decisions (Adler & Kushnick, 1982; Van Flutte, 1988).

Lloyd and Laurence (19 8 5) identified that suppoi t was "remarkably sparse" (p. 909) immediately following pregnancy termination for fetal abnormalities. "The 'death' was passed over, denied, regarded as a failure of pregnancy and the mother was met by a conspiracy of silence" (Lloyd & Laurence, p. 909). Some women and couples had indicated important people in their lives, even their own parents, did not support their decision to terminate and even advocated against the decision (Kenyon et al., 19 8 8; Zeanah et al., 1993). Kenyon et al. noted two cases where there was a permanent alteration in the parental relationship. Other authors found support to be minimal or inadequate (Kokler & Burke, 1993; Zeanah et al.,). Montiguy, Beaudet, and Dumas (1999) found that although some families experienced feelings of support from their social network, most in their study suffered permanent relationship losses with colleagues, friends, or extended family members. Zeanah et al. observed that





28


feelings of alienation and abandonment were further exacerbated by physicians and other health care professionals.

Less distress was identified by Black (19 89) when greater support was perceived. Those who felt supported received most of this support from their partners, other immediate family members, and close female friends (Kenyon et al., 1988). Jones et al., (1984) observed that 80 % of the men and women felt supported by their family with virtually no experience of hostility or condemnation. Mueller (1990), from her professional opinion as a practitioner and educator, suggested that special nursing care protocols needed to be designed to meet the emotional and spiritual needs of the family. Lask (1975) placed emphasis on the importance of staff attitudes for support. "The couple must be treated by society as the bereaved parents they are and allowed to mourn the death of their baby" (Kolker & Burke, 1993, p. 524).

Several authors made recommendations to improve current services. These included early referral to a level three perinatal center which is equipped to handle high risk pregnancies and neonates, information and early counseling, supportive and well informed health professionals, consideration to physical pain relief, assistance in memory making, anticipation of grief and assessment of the need for intervention, identification of possible impediments to successful readjusting, importance of early follow-up, and the availability of self-help support groups (Kenyon et al., 1988; Lloyd and Laurence, 1985; Matthews, 1990;).





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Subsequent Pregnancies

Little research was found about subsequent pregnancies in this population. White Van-Mourik et al. (199 1) reported that parents found hope for another pregnancy of great importance and that successful subsequent pregnancies following a second trimester termination for fetal abnormality tended to counterbalance the loss of biological self-esteem observed and, to some extent, parents' feelings of social competence. Blumberg (1975) noted, "The birth of a healthy child also provides a source of self-esteem and helps alleviate much of the guilt engendered by the previous confrontation with genetic disease" (p. 807). The hesitation of some couples to become pregnant again is due to their worry that the next baby will have the same condition as the previous child (Borg & Lasker, 19 89). Rothman (19 8 6) described one woman's experience with a subsequent pregnancy as going into the pregnancy too fast. This woman "advises others to wait, give themselves time" (p. 216). Unfortunately, the amount of time between the pregnancies was not given. Rothman noted that time is not exactly on the woman's side, especially those who have prenatal testing related to their age. "The loss of a baby is what it is, a loss, a tragedy. It is not a detour on the route to a healthy baby" (Rothman, p. 216).

Because a review of the literature suggested that the loss of a baby following termination for fetal abnormalities was akin to spontaneous perinatal loss for parents, subsequent pregnancies to perinatal loss was explored. Zeanah(1988),inhis literature review, found conflicting information regarding pregnancy following perinatal loss. For some, a subsequent pregnancy aided women in resolving their loss, but for others the pregnancy was a way of avoiding the loss and therefore,





30


impeding the resolution of mourning. Timing of the subsequent pregnancy was also found to be conflicted. Zeanab (1988) advised that bereaved parents need to recover emotionally and physically prior to conceiving. Most women have a difficult time if they become pregnant while still mourning (Menke & McClead, 1990). Individual recovery periods are unique and no specific time reference was substantiated by research (Wallerstedt & Higgins, 1994). Some parents were warned by their physicians against the possibility of the "replacement child syndrome." This syndrome refers to the subsequent child not being loved for him or herself as parents who have not fully recovered from their grief may possibly, even subconsciously, compare this child to the baby that died (Borg & Lasker, 1989).

Based on her review of the literature, Stierman (1987) reported that the

emotional drive to get pregnant again was quite strong, although rushing into another pregnancy may put the parents and their newborn at psychological risk. Borg and Lasker (19 89) believed that the overwhelming desire to have another baby quickly lessens as the urgency of this feeling subsides over time. Several researchers found that an early subsequent pregnancy or surviving twin were factors associated with prolonged maternal grief reactions or other psychiatric problems (Rowe et al. 1978; Stieman). Wolff, Nielson, and Schiller (1970) reported that 50 % of the 50 women in their study found that the resolution to their grief was in becoming pregnant again. Wolff et al. also reported that previous loss of a baby did not significantly influence the decision to become pregnant again. Garel, Blondel, Lelong, Bonenfant and Kaminski (1994), whose sample consisted of 50 women, found no clear relationship between the reactions following a miscarriage and the time between the miscarriage





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and subsequent pregnancy to the experience and outcome of the subsequent pregnancy. What Garel et al. did find was that the absence of history of infertility, the women's younger age and the desire for a child were all associated with a higher probability of starting a new pregnancy. About half of the patients sought out a different obstetrician for a subsequent pregnancy, not always due to dissatisfaction, but sometimes to avoid associations with the unsuccessful pregnancy (Stierman, 1987; Wolff et al., 1970).

According to Menke and McClead (1990), if a pregnancy occurred shortly after a perinatal loss, three emotional processes were functional. These included the mourning for the loss of the infant, the bonding to the new infant, and the fear that the loss will reoccur in this pregnancy. These authors suggested parents experience complex emotions even if pathologic grief does not occur. Several authors (Stierman, 1987; Borg and Lasker, 1989) reported that a subsequent pregnancy might be marked by ambivalence. When asked if they had regrets about their subsequent pregnancy, some women "expressed the wish that they had been able to enjoy the pregnancy more" (Schwiebert & Kirk, 1989, p. 77). Most authors agreed parents experienced markedly increased anxiety during their subsequent pregnancy (Armstrong & Hutti, 1998; Borg & Lasker; Phipps, 1985-86; Robertson & Kavanaugh, 1998; Statham & Green, 1994; Stierman). In general, parents reported increasing anxiety as the pregnancy progressed, peaking just prior to delivery (Kowalski, 1980; Phipps). As each important stage passed, parents held their breath, depending on what the cause of their loss was (Borg & Lasker; Lieberman, 1998).





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Families' readjustment to their new baby may be helped through recognition by others of their previous loss (Wilson, Soule, & Fenton, 1988).

Lieberman (199 8), in an article for a lay publication, identified typical

behaviors she noticed in parents' subsequent pregnancy to a loss. She suggested parents play it safe, gaining as much control over details as possible, seeking new medical strategies such as less or more medical intervention, and maintaining an emotional distance from their baby. Lieberman also suggested helpful strategies parents should be able to expect from professionals including extra indulgences from health care providers such as more frequent visits, private childbirth classes for those who "feel out of sync in a group class" (p. 60), and even possibly a connection to others who have had a simil experience.

In a qualitative study, Phipps (1985-86) interviewed 15 couples who had experienced a previous stillbirth or neonatal death and a subsequent successful pregnancy. The interviews occurred when the age of the subsequent child was from 5 months to 3 years. The focus was on stresses unique to the subsequent pregnancy and parental adaptation to them. Two general phenomena were identified-the taskoriented approach to pregnancy and sensitization to negative outcomes. The taskoriented approach, motivated by parental needs for control and self-protection, described a qualitative difference in the way parents experience the pregnancy as a whole. Parents portray an outwardly joyless quality as they engage in a process of holding back, not becoming totally involved in this pregnancy as they had in previous pregnancies. Sensitization to negative outcomes referred to the parents' state of hypervigilance with a perception of their increased vulnerability and struggle





33


to control overwhelming fears (Phipps). Holding back and not becoming as emotionally attached in their subsequent pregnancy was noted by several authors (Armstrong & Hutti, 1998; Lieberman, 1998; Phipps).

Summary

The body of literature on prenatal testing and subsequent influences on

childbearing was not exhaustive. Many quantitative studies have been conducted across the disciplines, some with contradictory findings. There was little evidence of a theoretical basis for any of the quantitative studies reviewed. Ihe few qualitative studies reported were well thought out, although several had a small sample size (Bryar, 1997). T"bis is important as qualitative studies such as those by Sandelowski and Jones (19 86) and Matthews (1990) provide us with sensitizing concepts and the beginnings of middle range theories.

The majority of the research in this area focuses on women. There is a

limited amount on couples and almost nothing that focuses exclusively on males. Another area that is severely limited concerns the impact of prenatal testing and subsequent decision making regarding fetal abnormalities on parents' experiences with future pregnancies. There was little found on the problems parents face in these future pregnancies. It would be helpful to provide a theoretical foundation for health care professionals to draw upon as they work with these parents during these difficult times. The purpose of this study was to explore and describe the social processes of couples who become pregnant subsequent to the loss of a baby with a prenatal diagnosis of a fetal abnormality. This research contributed toward filling this gap in the literature.













CHAPTER 3
METHOD

Research Approach

The qualitative method used for this study was grounded theory, a method

developed by Glaser and Strauss (19 67) for researchers to study phenomena from the symbolic interactionists' perspective (Bowers, 1989). An important aim of grounded theory is to accurately perceive and present another's world (Hutchinson, 1993). This method contributes to the development of middle-range theories through the exploration of the richness and diversity of human experience (Streubert & Carpenter, 1995). Grounded theory is an inductive approach that uses organizational patterns and everyday behaviors to generate theory (Hutchinson).

An assumption of grounded theory is that people order and make sense of their environment even if their world may appear nonsensical or disordered to observers. People sharing common circumstances experience shared behaviors and meanings that constitute the substance of a grounded theory (Hutchinson, 1993). From the symbolic interactionists' perspective, what makes individuals unique is their ability to symbolically define their experiences and shape their actions (Wilson & Hutchinson, 199 1). Glaser (1978) suggested that to gain theoretical sensitivity, a researcher must enter the research setting without a prior hypothesis and with as few predetermined ideas as possible. Grounded theory deals with what is actually happening, not what ought to happen (Glaser).



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Symbolic interactionism was selected as the theoretical framework and

grounded theory as the method for this study because of the interactive nature of the problem under study-that of parents' experiences when facing a pregnancy subsequent to a pregnancy in which they had to choose to terminate or not to terminate following the diagnosis of a fetal abnormality. These parents interacted with technology, their partners, other family members, their environment, as well as health care professionals and the health care system. The past and present fife experiences of these parents determined their interactions. Grounded theory allowed me to enter the parent's world to gain a better understanding of their perceptions and experiences.

Methodological strategies required for this approach accounted for change over time and involved direct contact with the participants under natural conditions (Wilson& Hutchinson, 199 t). Grounded theory addresses social psychological problems with the distinct advantage of fading natural solutions to the problem under study (Stem et al., 1982).

Sample Selection

Sampling in grounded theory is purposive unlike quantitative studies that use probability sampling (Morse, 1986; Wilson & Hutchinson, 1991). All members of the population, in a probability sample, have an equal chance of participating in the study and the results should be the same as if the entire population was included (Morse). In purposive sampling, participants are selected on the basis of their willingness and ability to articulate their insightful experiences on the phenomenon being studied (Morse; Sandelowski, 1986). In grounded theory, sampling proceeds





36


on theoretical grounds and is termed theoretical sampling (Corbin & Strauss, 1990; Sandelowski). This is a process by which data are collected to advance the emerging theory. I selected sample members based on emerging findings in order to obtain good representation of the theoretical constructs (Polit & Hungler, 1995).

Initially, a purposive sample included pregnant women and their partners who were pregnant subsequent to a pregnancy in which they had to choose to terminate or not to terminate, following the diagnosis of a fetal abnormality. The initial sample came from an urban community in northeastern Florida. In the beginning, I recruited these parents through the women's obstetrician or reproductive endocrinologist. I approached Obstetricians, geneticists and reproductive endocrinologists in this community through face to face contact and/or a written notice describing the study and asked for potential participants (see Appendix D for details). To participate women had to be currently pregnant subsequent to a pregnancy in which a decision to terminate or not to terminate following the diagnosis of a fetal abnormality was made. To be included the woman and/or her partner had to be willing to share their experiences. Interviews occurred at any time during pregnancy in order to maximize diversity of experiences in perception. Word of mouth or snowball sampling were additional recruit Mig strategies used. Snowball sampling occurs when potential participants are referred by current study participants (Morse, 1986).

After approximately 5 months of obtaining only 4 participants in a

northeastern region of Florida, I decided to recruit outside of this region. An addendum (see Appendix G) to the original proposal permitted recruitment of





37

participants through a support network via the internet. The sample size increased quickly.

A sample size of 24 participants was obtained over an 8 month period. This included 13 women and 9 partners, and 2 professionals-a physician and a registered nurse. Saturation was the determining factor for stopping data collection. Data were considered complete/saturated when no new conceptual information was available (Hutchinson, 1993). Saturation of the data started to become evident after the 20th interview. Two professionals were then interviewed along with 2 other women to establish confirmation of the codes.

Sample Demographics

The parents interviewed in this study ranged in ages from the youngest being a woman at 25 to the oldest, a man at 47, and had a median age of 33 (see Figure 3-1 for details). All of the parents were married with lengths of their relationships ranging from 2 V2years to 16 years (see Figure 3-2). The nationality of the majority of the parents, (20), was Caucasian with the remaining 2 being Hispanic and Turkish. All of the parents in this study were either in the middle or upper range in socioeconomic status. Ten parents were in the $24,000.00 to $60,000.00 range with the remaining 12 parents in the over $60,000.00 range. Everyone in the study had a
imum of a high school diploma, but most had four year degrees or higher (see Figure 3-3 for more details). Religious preferences for the parents in this study varied with 9 being Catholic although not all were practicing at the moment (see Figure 3-4).






38







15 I Participants

14

12

10

8-r

6 4

42




<=34 35 39 40 44 >=-45
Age Groupings Figure 3-1 Participants by Age Category




9
10

9 8
8- Mjg Participants

7

6


4

3-// 2-

]-A 0-

<=3 Yrs. 5 10 Yrs, 11 16 Yrs.
Years of Mariage Figure 3-2 Participants by Length ofMarriage







39








Masters 17%









Degree 17
37% Other



. .. .. .Ph.D
4%/


4%



Partial College 21% Figure 3-3 Participants by Level of Education




10- 9
9.-

8 - .. ..... ....


7-

5-











0






Religious Preferencez Figure 3-4 Participants by Religious Preference





40


Participants resided in geographic locations all over the United States. I

interviewed 3 parents and 2 professionals face-to-face in Florida and the remaining 19 parents by phone in other locations throughout the United States. Internet access allowed me the ability to obtain participants representing almost all of the regions in the United States except the far Northeastern region. Although, the sample was somewhat biased, representing mostly parents in higher socioeconomic classes over the age of 24 with higher levels of education. Probably only those persons who have the financial means and the educational background, which tends to make them older, use the Internet.

The majority of the parents in this study chose termination of their previous pregnancy. Nineteen parents, 3 mothers and 8 couples chose termination while only

3 parents, 1 mother and I couple chose not to terminate. The gestational age at termination ranged from 17 weeks to 24 weeks (further details can be seen in Figure 3-5). One couple terminated their past 2 pregnancies for the same fatal condition, Congential Nephrosis of the Finnish Type, 1 a singleton pregnancy and the 2nd a twin pregnancy. The parents who chose not to terminate did not have a final diagnosis until 27 and 28 weeks of gestation. One of these babies that was not terminated died shortly after birth with multiple anomalies, and the other baby lived with a condition called Spina Bifida. The majority of the parents in this study did not have any other living children. One couple and 3 mothers who were interviewed had 1 to 3 living children ranging in ages from 1 lmonths to 16 years. For 8 couples and 1 mother, the pregnancy they were in during the interview was the first hope of having a child that would live beyond birth.





41


Parents in this study encountered many types of abnormalities and had to decide whether or not to terminate the pregnancy. One woman and one couple terminated for Down syndrome; one couple terminated and one woman did not terminate for Spina Bifida; two couples terminated for Congenital Nepbrosis of the Finnish Type, one couple chose termination in two separate pregnancies for this same syndrome; one woman and two couples terminated for multi-faceted anomalies in their babies; one couple each terminated for Bilateral Renal Agenesis and for Prader Willi's Syndrome, a genetic disorder characterized by infantile hypotonia, obesity, short stature, mental retardation and personality problems; one woman terminated for anencephaly; and one couple chose not to terminate for Autosomal Recessive Polycystic Kidney Disease.

I interviewed parents for this study at any time they became available.

Mothers were from I11 weeks to 39 weeks gestation (see Figure 3-6). Referrals for participants for the study came from varying sources; the majority came from one support group called A Heartbreaking Choice (AHC), discovered via the Internet. This group gave me permission to advertise in their quarterly newsletter. Seven women found out about the research through AHC and informed their husbands, 6 of whom became participants. The rest of the referrals came from different places; 1 couple each from a local physician, through another participant via AJIC, and through a SHARE newsletter (another national support group); 1 woman each from a local colleague, a nurse in a local obstetrician's office, and through a genetic counselor who shared an RTS newsletter (still another national support group) with her. Three of the women whose partners were not interviewed said that their






42





1412- ?
10-/ 8 13_. mParicipants



6-/





<=17 Weeks 21 -24 Weeks Did Not Terminate
Gestratio n P erio d

Figure 3-5 Gestation Peniod at Terrunation 2-/


- j: '















<=2Weeks 12 Weeks 21 30 Weeks 31 39Weeks
Gestation Period Figure 3-6 Gestation Period atTime of Interview





43

husbands were just too busy at the time. The professionals interviewed practice in a high-risk obstetrical office in Northeast Florida. One professional was a perinatologist and the other a registered nurse. Data Collection

Formal, audio taped semi-structured interviews lasting approximately one to two hours were the primary source of data for this study (see Appendix A for interview questions). Interviews took place either at the participants' homes, my home, or over the telephone in a relaxed and non-threatening environment, that allowed participants to share their experiences. I interviewed couples separately to gain their individual perspectives. Interview questions proceeded from general to particular and changed over time as the theory emerged. Eliciting fundamental information to explore the phases, properties, dimensions, strategies, consequences, and contexts of these parents' perceived experiences was the primary focus. Additional data included one woman's personal journal. Field notes describing the setting, observations, and any events of particular interest to the study were dictated. I transcribed tapes verbatim as soon as possible so that no data were lost. Data Analysis

In grounded theory, data analysis is continual and occurs simultaneously with data collection. Glaser and Strauss (1967) first described this fundamental method of data analysis as constant comparison. This method requires the analyst to compare incident with incident, incident with category, and category or construct with construct (Hutchinson, 1993). "Constantly comparing develops in the analyst a





44


clear, focused flexibility to keep transcending his own and other analyses until he theoretically saturates his problenf' (Glaser, 1978, p. 15).

Coding. Glaser (1978) suggested that ideational codes are the building block of the theory. Open coding, coding the data in every way possible, was the first step. That is, the data were analyzed line by line, constantly coding every sentence. The codes identified during this process are called substantive codes. These codes are considered level I codes and codify the substance of the data and frequently use the same words used by the participants themselves (Stem, 1980).

Level 11 codes, also called categories, require the use of the constant

comparative method. Data were coded, compared with other data and then assigned to categories or clusters according to obvious fit. As categories emerged continually asked three questions: "What is this data a study op. "; "What category does this incident indicate?"; and "What is actually happening in the data?" (Glaser, 1978, p. 57). The emerging categories were compared with one another to ensure that they covered the behavioral variations and were mutually exclusive.

Level M codes, called theoretical codes is a way to think of the data in

theoretical rather than descriptive terms (Stem et al., 1982). Open codes break the data into small pieces, whereas theoretical codes weave the fractured story back together again (Glaser, 1978). Through theoretical codes, the researcher examined how the substantive codes related to one another as hypotheses to be integrated into a theory (Glaser). Through this comparative process, I identified a core variable or basic social process (BSP). Once a core variable was identified, selective coding





45

began with the aim of expanding and densifying any codes that related to it (Hutchinson, 1993).

Basic social process. For a quality grounded theory, the discovery of a core variable is essential- Rigorous analytical thinking combined with continuous examination of the data eventually yielded such a variable (Hutchinson, 1993). Thle believability of the core variable is dependent upon its tidiness, understandability, and ability to explain most of the variation in the social psychological problems of the research (Stem et al., 1982). Since BSPs are fundamental, patterned processes in the organization of social behaviors occurring over time and irrespective of the conditional variation of place, Glaser (1978) described them as pervasive. Glaser identified two types of BSPs: basic social structural process (BSSP) and basic social psychological process (BSPP). A BSSP describes the social structures in process (Glaser). In the case of this study, these BSSP's were those processes in the health care system that affected the parents and their experience with the second pregnancy. The BSPP illustrated social psychological processes as they continued over time irrespective of varying conditions. "A BSSP abets, facilitates or is the social structure within which the BSPP processes" (Glaser, p. 102). Most sociological studies today focus on BSPP and assume BSSP without formulating the BSSP clearly as a process. This study examined the BSSPs in addition to the BSPP, but emphasized the BSPP.

An assumption of grounded theory is that each group shares an unarticulated social psychological problem and this problem is addressed by a social psychological process. Catastrophic psychic pain was the basic social psychological problem that





46

emerged from the data in this study which will be discussed in detail in Chapter 4. Managing the pain was the BSP, or core variable, identified as the process these parents used to cope with the catastrophic psychic pain, and will be discussed in Chapter 5.

Selectively coding for this core variable required that I delimit coding to only those variables relating to the core variable in significantly sufficient ways to be used in a parsimonious theory. The core variable identified further guided data collection, theoretical sampling (sample selection) and analysis (Glaser, 1978).

Memoing and sorting. Beginning with analysis of the data following the very first interview or observation, memoing becomes a regular and crucial part of the grounded theory process. Through memoing, researchers record ideas quickly and spontaneously "to capture the initially elusive and shifting connections between the data" (Hutchinson, 1993, p. 20 1). According to Glaser (1978) the prime rule in memoing is "stop and memo" (p. 83) regardless of what has to be interrupted. This was fundamental so as not to lose the thought as my mind raced on through coding, sorting and writing. Memos were sparked by the data and were ideational, and in this way were grounded. They were written freely, kept separate from the data, and were easily sortable (Glaser).

Conceptualization of ideas was emphasized. While memoing, I questioned the relationship of one code to another. The thinking process during this phase was both inductive and deductive. Inductively, one conceptualizes while coding and memoing and then deductively assesses how the concepts fit together. Through the use of theoretical sensitivity and repetitive examination of the data, in which memos





47


become an integral part, both processes were aided. Literally hundreds of memos documenting this thinking process were developed, and through repetitive questions a theory evolved.

Sorting began once codes become plentiful and memos accumulated rapidly. A core variable, or BSP, was identified that explained most of the behavioral variation in the data. The BSP provided focus and direction for the sorting process.

Maintaining Rigor

Criteria for judging the adequacy of qualitative research is somewhat

different from that used to judge more conventional quantitative methods (Guba & Lincoln, 198 1,1989). Guba and Lincoln, in keeping with the nature of qualitative research and the naturalist paradigm, provided the researcher with criteria that parallel the more conventional criteria of validity and reliability (Hutchinson, 1993; Guba & Lincoln, 1989). These terms, established to evaluate the trustworthiness of qualitative data, are credibility, transferability, dependability, and confirmability (Guba & Lincoln, 1989; Polit & Hungler, 1995).

Credibility parallels internal validity and refers to truth value, the confidence in the truth of the data (Guba & Lincoln, 1981, 1989; Polit & Hungler, 1995). A qualitative study is considered credible when it presents such a faithful interpretation or description of a human experience that those persons having that experience would quickly recognize it from those interpretations or descriptions as their own (Sandelowski, 1986). The technique of checking interpretations with participants is called member checking by Guba and Lincoln (19 89) and is used to verify the multiple constructs the researcher identifies from the data. I shared study results





48


with a woman who had not previously been interviewed but was currently pregnant following the termination of a previous pregnancy. She verified that the constructs identified from the data were in fact, very similar to what she too had experienced.

Another process used to establish credibility is peer debriefing which

provides an external check on the inquiry process (Polit & Flungler, 1995). In peer debriefing, the researcher checks data and interpretations with colleagues and/or experts. The data and interpretations were shared with my major professor. Also, the theoretical constructs discovered were shared with two professionals who were interviewed. Both felt the interpretations were consistent with their clinical experience.

Parallel to the more conventional term, external validity, is transferability.

Transferability refers to the generalizability of the data (Guba & Lincoln, 1989). The concern with qualitative research is not statistical generalizability but analytic generalizability. Analytic generalizabiity refers to the usefulness of the identified concepts/constructs to explain a given situation (Hutchinson, 1993). The qualitative researcher provides "as complete a data base as humanly possible in order to facilitate transferability judgments on the part of others who may wish to apply the study to their own situations" (Guba & Lincoln, 1989, p. 242). One way of checking transferability is to have non-participants who have had similar experiences review the generated theory. I interviewed two women after the theory was generated in order for them to review the theory. They agreed with the findings, and in fact, expressed relief that they felt so similar to the others.





49


Dependability may be thought of as parallel to the more conventional criteria of reliability and is concerned with the stability of the data over time (Guba & Lincoln, 1989). The uniqueness of human experiences and the importance of situations that are not necessarily attainable through validation of the senses are emphasized in qualitative research. Therefore, identical repetition is not sought but, rather, variations in human experiences. Guba and Lincoln (1989) suggested the use of the dependability audit to document the logic of process and method decisions. Auditability of a study and its findings is possible when another investigator can clearly follow the "decision trail" used by the researcher in the study (Sandelowski, 1986, p. 33).

Confirmability parallels the more conventional criteria of objectivity and

concerns itself "with assuring that data, interpretations, and outcomes of inquiries are rooted (grounded) in contexts and persons apart from the evaluator and are not simply figments of the evaluator's imagination" (Guba & Lincoln, 19 89, p. 243). In qualitative research, the investigator is expected to be involved with the participants. Comfirmability refers to the research findings themselves, not to the objective or subjective stance of the investigator (Guba & Lincoln, 1981; Sandelowski, 1986).

In order to maintain rigor in this study, I participated in peer review of coding and theory generation with my professor and other doctoral level nursing students at the University of Florida. I participated in member checking with one specified participant and maintained all field notes, transcripts, and theoretical notes for auditing purposes. My interest in this study population was derived from facilitating a pregnancy loss support group and providing counseling to parents who have had to





50


make decisions to terminate or continue their pregnancies over the past 10 years. In addition, I have been a nurse for 22 years. To reduce the chance of researcher bias, I kept a personal journal and notes during the course of the study to facilitate reflection of personal feelings and insights. According to Sandelowski (1986), "the credibility of qualitative research is enhanced when investigators describe and interpret their own behavior and experiences as researchers in relation to the behavior and experiences of subjects" (p. 30).

Ethical Issues

Nurses are patient-client advocates, where empathy, trust, and compassion should encompass all endeavors, including research. Nursing has espoused to deontological principles that humans be treated as ends in themselves and not as means to an end (Munhall, 1993). Ethical considerations of fieldwork were addressed throughout the research.

Participant confidentiality, anonymity, privacy, and autonomy were

maintained. On initial contact with possible participants, the purpose of the study was explained and before beginning the interview process, an informed consent (see Appendix B) was signed. Prior to initiation of the study, approval was obtained through the Institutional Review Board (IRB) of the University of Florida Health Science Center, Jacksonville, Florida (See Appendix F).

An ethical issue considered to be a possibility during the interviews

concerned the possibility of additional psychic pain for the participants as they discussed their experiences related to the loss of their baby. It is important that researchers dealing with bereaved persons have training in this area. In addition to





51


the experience mentioned earlier, I am certified as a Clinical Specialist in adult psychiatric and mental health nursing and have taken multiple courses in dealing with grief and loss. I know that emotionaUy charged topics require exceUent listening and empathy (Rosenblatt, 1995). According to Rosenblatt, "any interaction about a loss has the potential to provide a new awareness, integration, and feelings of healing" (p. 15 1). It is possible that through interviews, participants can move through their pain and begin to gain a new awareness, integration and feelings of healing. Although it was not the purpose of the interviews to provide therapy, some participants seemed to have benefited from them therapeutically.

Participants learned they not only could refuse to be interviewed but could stop the interview at any time. If the participant became upset, as evidenced by her/his inability to talk or continuous sobbing, I reminded him/her that the interview could be stopped. I could have referred the participant to a counselor, but this did not become necessary. Many participants in this study had to stop talking on occasion because of crying and general emotional distress. However, aU participants insisted on continuing the interview. in fact, all of the participants wanted to share their stories and were glad that someone was willing to listen. One father said, "I'm happy anybody's listening to my story at this point." One mother said it made her feel good to "know that we were a part of something that's going to help other people." Another mother said,

I firid this [interview] incredibly cathartic ... this helped me. It helps me. I get one step closer to integrating this completely into my life and it's going to be a lifelong process. So every time that I get these feelings out, I am forced to work through them. ... So every time I cry about ... this child, is one step closer to being completely healed. When I say healed, completely integrating her memory, this event into my life in a way that will not be painful anymore.





52


Still, another mother said, "It's like when we tell our story it's almost healing in a lot of ways." And another, "every time I told the story, it made it a little bit easier to accept and actually I think that's a big part of my healing, [to] tell the story over and over again."













CHAPTER 4
CATASTROPHIC PSYCHIC PAIN:
THE BASIC SOCIAL PSYCHOLOGICAL PROBLEM Introduction

Becoming pregnant, for many, is an exciting time of life filled with

wonderment and awe at new beginnings. When a couple decides to start a family or expand their family, they usually go into the pregnancy with hopes and dreams of having a healthy, perfect baby. Pregnancy is a time of change and growth while preparing for this new life to become a part of the family. When parents are faced with the possibility of something being wrong with their baby and having to make a decision to continue or discontinue their pregnancy, their hopes and dreams are shattered. Their lives are changed forever. Having faced the darkness, the worst case scenario, the unimaginable in their previous pregnancy, subsequent pregnancies are not fall of anticipation of joy but instead become wracked with fear and uncertainty.

The purpose of this study was to develop a substantive grounded theory on

how couples experience a pregnancy subsequent to a pregnancy in which they had to choose to terminate or not to terminate following the diagnosis of a fetal abnormality. Basic to the grounded theory method is the discovery of a core phenomenon, which is both relevant and problematic for those individuals, that accounts for most of the variation in a pattern of behavior (Glaser, 1978). Catastrophic psychic pain was the basic social psychological problem that emerged




53





54


from the data in this study of couples who shared their experiences of a subsequent pregnancyThe purpose of this chapter is to discuss the problem of catastrophic psychic pain, laying the groundwork for a discussion in Chapter 5 on how these parents coped with this problem

The Diagnosis

Prior to being able to talk about their current pregnancy and their present

psychological state, all of the participants found it necessary to review their previous experience that brought about their catastrophic psychic pain. The diagnosis of a fetal abnormality was the beginning of their "nightmare." The diagnosis was discovered in varying ways, by varying professionals, and at varying times in their pregnancies. For some, the first clue that something was wrong was through an alpha fetal protein (AFP) blood test, for others it was through ultrasound and/or amniocentesis. Not everyone was given an immediate diagnostic answer. One couple, who later chose not to terminate, were made aware that there might be a potential problem at their 20 week ultrasound. It was 7 more weeks before the diagnosis of a rare but fatal disease, Autosomal Recessive Polycystic Kidney Disease, was confirmed. Another couple whose 16 week AFP came back "hugely elevated" went through numerous ultrasounds and an amniocentesis fading non conclusive evidence, only suspicions of a rare kidney disease. This couple only knew "something was very wrong. This is very abnormal. The outcomes don't look good, but we don't know what's wrong." It wasn't until the autopsy results following their termination that they found out conclusively that their baby had





55


Congenital Nephrosis of the Finnish Type, another extremely rare autosomal recessive disorder.

Still another couple who was not scheduled for an ultrasound at their regular obstetrician's office "until about 18 or 19 weeks" happened to know a resident at one of the hospitals in their town who scanned their baby for "fun" at 16 weeks one Saturday night. The resident let the father know that night that "he thought it was anencephalic." They went into a specialist's office on the following Monday and had the diagnosis confirmed through a level II ultrasound.

In this study parents were confronted with multiple types of diagnoses,

including Down syndrome, Spina Bifida, Trisomy 18, Congenital Nephrosis of the Finnish Type, Bilateral Renal Agenesis, Prader Willi' s syndrome, Auto somal Recessive Polysystic Kidney Disease (ARPKD), and two couples were given a general diagnosis of multiple anomalies which included multiple malformations of major organs. In years past many of the diagnoses meant certain death for these babies either before birth or shortly thereafter. Today, with advances in technology, immediate death is no longer certain, but professional debates are common about how long infants will live and what their quality of life will be with or without medical intervention. Other diagnoses do not have a death sentence, but the question then becomes one of quality of life for the baby and the rest of the family, resulting in uncertainty for all involved.

Some parents were skeptical about the diagnosis and had a fear that the medical professionals were wrong "because the ultimate fear of a person going through what we went through is to ... have a dead baby presented to you that





56


looked normal." As one father said, "sometimes people do make mistakes." Consistent with Kenyon's et al. (19 8 8) findings it was important for parents that the diagnosis be confirmed "correct" at birth.

The news of the diagnosis sent one woman into limbo between two worlds:

Back in my ... world of I'm a woman who won't have a problem with a
pregnancy, that world was kind of crashing down. But it hadn't quite moved into the world where abortion, terminating a wanted pregnancy was an option.
So I was in this ... space between those worlds.

Another woman described the day the diagnosis was made as"the terrible day." She went on to explain how she and her husband, upon hearing the devastating news that their son had Down syndrome, "went outside the door and um, just both of us just stood there in the hallway and just cned." Hearing the diagnosis was only the beginning of their pain for the parents in this sample.

After diagnoses some parents faced making decisions about conditions they had never heard of before. Many of the diagnoses concerned extremely rare conditions affecting only a very small percentage of the general population such as "l in 4,000" or "I in 50,000". Some healthcare professionals were not even familiar with the diagnoses. Thus, acquiring knowledge became an important factor in these couples' experiences. They sought information about the diagnosis from everywhere including professionals, libraries, bookstores, the Internet, and others who may have been in similar situations. One woman discussed her way of dealing:

I start looking for information. Urn, when we found out (the baby) had ARPKD [Autosomal Recessive Polycystic Kidney Disease] we started looking for information .... We actually went to our meeting with the
genetic counselor knowing more about the diagnosis than [the counselor]
did, which was a disappointment.





57


Parents believed that knowledge was fundamental to making the decision to terminate or not and the type of termination they would choose.

While seeking information, parents were extremely vulnerable. One mother sought out a bookstore for her reading materials only to find the section on grieving the loss of a baby was located next to the expecting a baby section. She described that experience as "It's like here you are, you're like more fragile than a china cup and, . it's like the last thing you can ... handle so I'm sure meltdowns in that book section are very comm n."

Diagnostic Consequences

Catastrophic psychic pain was the major diagnostic consequence for the parents. Catastrophic means a disastrous end; any sudden and great disaster, calamity, or misfortune; or an ignominious or total failure (Guralink, 1974). The diagnosis completely violated parents' previous thoughts, hopes, plans, and dreams. They believed everything was fine with this baby, and then, "a ton of bricks was dropped on [our] heads." The word pain in many ways is almost interchangeable with what some professionals would term grief, or at least a part of grief The pain was unexpected, intense, and never ending. Unexpected Pain

The pain was unexpected. These couples went into their pregnancies with happy-go-lucky attitudes, expecting perfect pregnancies, and they met disastrous circumstances. One mother described it as "when you're hit with something as unexpected as what we were hit with, the news that we were carrying a baby with a grave defect ... it was a huge, huge shock." As seen in the literature (Jones et al.,





58

1984), parents talked of being totally ignorant of the fact that something like what happened could ever happen to them. "It was unbelievable shock, because you don't consider things like this are going to happen." The diagnosis was an unexpected assault "like someone was taking a two by four and just smashing you up the side of the head." Another mother who had dealt with years of infertility described it this way:

Our last pregnancy was ... an incredible miracle ... so we were looking
with incredible joy. And when we found out what was wrong, it was ... a
real shock because I was at incredibly low risk for complications. I had ... a glorious pregnancy up to that point and were just kind of hit out of
the blue.... I had gone for a normal 20 week ultrasound. All the prenatal
work had been perfectly normal and when we had the ultrasound, . it was a
very strange experience. We just felt like, I think I died in that moment and
was reborn the next, as a totally different person.

This type of experience is just totally out of the realm of most parents' reality.

Nobody teaches you in your life experience how to choose to end your child's
life. Even if it's you know a terminal anomaly, the baby is never going
to live, you're still picking the day. Nobody prepares you for that in your
whole life. You know everybody goes to funerals and knows about relatives
or friends or people that die and yet people know how to do that.

Even parents who had knowledge of some types of fetal abnormalities were unsuspecting of something like this ever happening to them. One woman with a special education background whose baby had been diagnosed with multifaceted fetal anomalies explained that "basically I had not even considered the possibility of a fetal anomaly except for the ones, the types of genetic disorders you've heard of. ... I ... was familiar with Down syndrome and other types of genetic disorders and didn't consider that to be something that I would ever terminate a pregnancy for." The shock was two-fold, first that they never expected to hear that their baby had any





59

type of serious abnormality, "deep down I just thought everything would ... always end up being fine," and second these parents never expected to be put in a position of choosing to continue or end their own pregnancy, "I certainly never, ever thought that I would ever have an abortion myself." Never expecting to be in the position they were in and feeling so different from others, many of the parents were uncertain of where to turn in their pain.

Intense Pain

The pain was intense, severe, extreme. "It's indescribable the depth of pain in your soul. I mean it's indescribable." One woman described her feelings as 44extreme just like anguish." At one point she felt suicidal and unable to function at all. Another woman described her pain as "every day was so painful to live through . I don't want to keep living every day in this much pain." A husband of another woman who had described feelings of wanting to die said, "I think she just wanted to stop the pain because she really hurt, really hurt bad." The intensity of the grief was so bad for one woman she "was pretty incapable of doing much more for anybody else, . [and] wasn't able to do anything else but work and cry." This woman's husband described her as being "out of commission, basically." The pain was so intense for another woman that it even invaded her sleep, "one night I woke up at 2:00 in the morning and just had a screaming fit, it was just hysterical crying." A man described it as "the blackest time I've ever been in ... almost like falling into a bottomless well and where there was no light." "It was awful ... I would never want anyone I love to go through so much pain.... No one should have to go through that kind of grief."





60


Spousal differences. The intensity seemed to be different for men and

women. Ah-nost all agreed that the woman's grief was somewhat more intense and that it lasted longer than a man's. One father explained how they both cried and felt anguished, but that his wife cried more and experienced the loss more deeply. This same father explained that "women are more naked to pain than men are because I think they do have this very intimate relationship with the baby from the first moment on." Several of the fathers talked about wanting to be there for their wives but "there were times when she wasn't letting me in ... almost too unbearable for her to even communicate much." One woman described the difference as "he says it's painful, but then I start thinking I don't ever see you cry.... He shows things differently." Another woman speaking of her husband said, "he doesn't understand how deep my feelings are." One woman described how her husband put his grief on hold

because every time he saw me crying he would rush to me and he
wouldn't grieve himself and one particular night I was sitting in the baby's
room rocking and crying and singing lullabies and you know flipping out
because I did this for months.

After much thought, one father described what he believes to be the reason for spousal differences in grief

[It's] because when all is said and done through all of this the father has what's most important to him in the world and that's his wife and she's
safe and sound and healthy and with him And the wife and mother does not have what's most important to her and that's her baby because I think that ...
in the order of importance to a mother is her children and then her husband and then herself. And to a husband, it's his wife, his children and himself
So I think that's why the grieving process is different and the depth is
different because of those two things. You have what's most important to you which is your wife but she doesn't have what's most important to her
which is her child.





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One mother described the differences she saw in how men and women grieve.

I think that the men have a tougher time than the women because everybody focuses their attention on the women, on how they're getting through it and
nobody I mean people would call here and they an asked how I was first....
I mean I was worried about my husband but I was more worried about me and
the loss. Where as I mean in society today men are still raised as the fixer
and the protector and they have nothing that they can do except watch you be
crushed.... They're helpless, and they're also dealing with their own pain.
But then their own belief that they are supposed to be able to make it better
but then they can't but then they're in so much pain themselves but then she's
feeling it and I mean we just feel it differently is what I think.

Similar to Kenyon's et al. (198 8) finding that women felt most supported by their husbands, most all of the women in this study felt supported by their husbands, and most of the men felt their wives supported them as best they could.

Guilt. As seen in the literature (Donnai et al., 19 8 1; Green, 1992; Iles &

Gath, 1993; Kenyon et al., 1988), feelings of guilt from having to choose the fate of their unborn child were a factor for some that seemed to contribute to the intensity of the pain. Guilt not only seemed to compound the pain but it was also an additional type of pain. One mother said, I think the thing that intensifies it to some degree is there's, I mean incredible guilt associated at the same time." She also explained, "nobody teaches you how to deal with the death of your child especially at your own hands." Being involved in the actual decision to end or not to end their child's life tremendously intensified the pain, "because you have to be involved and be an active participant in the whole decision making process. It's much, much, much easier to have things happen to you ... as opposed to deciding that things will happen."

Wantedness. Still another factor in the intensity was that the pregnancies in which these couples had to choose the fate of their unborn children were, for the most part planned, wanted pregnancies similar to what was noted in the literature





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(Donnai, Charles, & Harris, 1981; Jones et al., 1984; Kenyon et al., 1988). One mother described her pregnancy as "an extremely planned event." All of the participants in this study described their prior pregnancy as being a much desired pregnancy. Even those few who had not planned the pregnancy were happy about being pregnant and excited about having a baby by the time they were hit with the news of serious problems.

Never-Ending Pain

Most of the parents described the most intense periods of pain being in the immediate months following the death of their child. But even though the intensity seemed to diminish over time, almost all described the pain as "it never goes away." As this pain never completely goes away, it becomes never ending. "It isn't going to go away and I don't think anybody else understands what we've been through." Not even distance can separate these parents from their pain. One couple decided to move across the country following their loss, but the wife explained the move was not to run away because "there was no running away from what had happened, it was . going to be with us forever." One father talked about not being able to "replace this child, it's impossible, the loss is always there." Another father described it as always "in the back of your mind." There seems to be some very painful reminders for some. Like one woman who said, "it's been really hard to see my niece who is basically like two months younger than my son would be.... It's a real reminder."

This catastrophic psychic pain touches the very core of being in these

individuals and sends a rippling effect throughout their lives. One woman searching for information read about how this experience impacts individuals for the rest of





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their lives. "You know I didn't believe what I was reading, and I was wrong at that point in time. I know this will always affect my life." Most parents "don't want to forget about it." One woman said, "it'll be a lifelong affair." Another woman who kept her baby's ashes explained, "I have a feeling I'm going to carry around these remains with me, and . I told [my husband] I think I decided that whenever I die [he] can just put these in the casket with me."

This never ending psychic pain is similar to a concept found in the literature called chronic sorrow. Chronic sorrow was first described by Olshansky "to explain the parental response of lifelong, episodic sadness to the birth of a mentally disabled child" (Teel, 199 1, p. 1313). Teel adapted this definition describing it as, "a pervasive psychic pain and sadness, stimulated by certain trigger events, which follows loss (through permanent inaccessibility) of a relationship of attachment" (P. 1316). The sorrow is a natural response to a tragic fact: it recurs periodically, but is not constant (Teel). One woman described it like this,

We have a little box that has all the baby's things in. There's still times, I keep it in my room. I don't open it often but sometimes, the other night I just went to dust it and I started to cry you know. There's times where it
comes back to you.

Another woman said, memories come up at the strangest times and we're fine for months and months and months, and then all of a sudden crash.... it still hurts a lot." A physician described what he sees with his patients.

It's in your mind and right now it's right here (points to the top front
portion of head) in front of you, in your eyes. Hopefully 5 years from now
it's going to be back here (points to back of head). it's still going to be in
your mind, but farther back in our memory banks where there will be
triggers that will bring it back, situations that will bring it back. And those
triggers and those situations are going to become less and less and less.





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One woman confirmed this as she said, "it doesn't go away, you just learn how to carry it in your head and have it not interrupt your everyday life and the stupidest thing will set it off... Sometimes I see babies that look like him and you know [that] brings it back." As one father said, "neither of us are over with the grief... I don't think that it will ever be gone away so it's you know going to be an ongoing process."

Painful Decisions

To Terminate or Not to Terminate

After the immediate catastrophic psychic pain that assaulted them when they learned the diagnosis, parents had to go on and make an exquisitely painful decision-whether or not to terminate their much-wanted baby. Being faced with having a baby with abnormalities and having to make this decision concerning termination is what sets these parents' pain apart from other types of grief experiences. All except one couple made their decision jointly and agreed on their decision. The couple who did not make their decision together felt it was the wife's decision to make, although the husband agreed with her decision. The option to terminate was presented to the couples mostly by their obstetricians but occasionally in connection with a high-risk perinatologist and/or a genetic counselor. For some, they already knew their options and just needed guidance as to where to go next.

Termination was by far the more frequent choice in this sample population consistent with several studies in the literature (Kokler, & Burke, 1993; Rayburn & LaFerla, 1982; Rothman, 1986), but not all (Matthews, 1990). Only one mother whose husband was not interviewed and one couple chose not to terminate following





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diagnosis. Instead, these mothers had to have a cesarean delivery due to the baby's condition or presentation- Of the non-terminated pregnancies, one child was born with Spina Bifida and is still living; the other child had Autosomal Recessive Polycystic Kidney Disease and died within hours of his birth. Those who chose not to terminate felt abortion was "just not an option for us."

In choosing to terminate or not, the majority of participants felt they had no choice, that there was only one choice. "In my mind there was no choice" and "what we were doing ... was the best thing." One father described it as "a choice between terrible and horrible and whichever way you go you're going to have to suffer major consequences and there's no real ... win-win solution." In reality, there were only negative choices. For those who felt they did have a choice, all chose termination. Another father felt certain he had a choice and still isn't sure he made the right choice in terminating, but at the moment it was the choice he felt he had to make. This was a choice no one wanted to have to make and in fact, some became angry at being placed in such a position as to have to make a choice at all. As one woman said, I'm sorry that I had to make it. I'm sorry that I was ever presented with that situation." Another woman said, "we had to make a decision for our child that no parent should ever have to make." Still, another woman who had previously suffered years of infertility said, "we've fought to bring this child into the world and now we're in a situation of having to end her life." The decision to terminate or not was extremely painful for all. One father said, "it's an extremely difficult choice to make ... and not taken very lightly."





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Timing of the Decision

The timing of the diagnosis and the subsequent decision was different for different families. 'fhe two families who chose not to terminate did not have a definitive diagnosis until 27 and 28 weeks into their affected pregnancies. For one of these mothers, she believed, "it would never be a plan in my thinking" to terminate. The other mother said, "it just didn't seem right." 'fhe husband of this second mother felt they should "ride it through and see what happens." Although there are many states where 24 weeks is the maximum cut off for a termination, there are also a few places in the United States where it is legal to terminate much later. For both of these families, they had passed the cut off date for their states, and would have had to travel out of state had they chosen termination.

For most, the diagnosis was confirmed between 16 and 22 weeks. Some

couples took much time and deliberation in making their decision to terminate. One couple took over 3 weeks as one father explained,

We went back and forth and we talked to everybody that we could talk to
... because we wanted to make sure that we didn't rush into a decision,
didn't feel like we were pressured to make a decision. We knew we had a
deadline, but we wanted to make sure that we had gone down every possible avenue to find out all the information we could from all the
professionals, as far as what did the future look like, . and then [1] still
even feel bad now.... It's definitely not the thing either of us ever wanted
to make a choice Eke that.

Another woman discussed how it took her husband and her "3 weeks to make our decision.... Both of us vacillated back and forth.... We pushed it further than they would have liked because I was actually 24 weeks when we went into the hospital."





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For others, the decision was made as soon as the diagnosis was made. "We really did decide in a couple of hours because they were telling us there was no hope." One mother described later regretting her quick decision.

I immediately thought of and began asking the ultrasound tech about, you know, what she thought like, you know, can I terminate this pregnancy? I mean I can't go on like this. I felt Eke I had cancer like I just needed to, to
cut this off of my body.

One husband explained, "when it became obvious in that second sonogram that the baby did not have kidneys, I mean basically right there and then looking at each other you know [we] said yeah, well we can't carry this to term." For still others, their quick decision came before they even became pregnant.

Before we ever got pregnant we had made a decision that if something
was wrong, you know seriously wrong with the baby not you know, not
missing an arm, not that that isn't serious, but something that would really
be a financial burden to the rest of the family or that was emotional, that we
would terminate the pregnancy. So we'd made that decision.

No one talked about being rushed into a decision, only how difficult it was regardless of how long it took or when in the pregnancy it occurred. Decision Rationales

Of those who chose termination, all but one woman found the entire decision making process very difficult. She described the decision of choosing termination as "the easiest decision I've ever made.... It was kind of a motherly protection. It was almost instinctive." Many described making the decision as somewhat altruistic aimed to prevent further suffering for the baby and themselves. One mother believed

that quality of life is very important and that ... I really believed that this
child would not have had a good quality of life. And I was fearful that if we
brought her into the world that we would not be able to care for her and I
could not in good conscience, as she grew we would not be able to care for
her, and we would have to delegate that responsibility to someone else.... I





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didn't think it was fair to put her through an incredible amount of pain and
suffering to correct what was a devastating injury, a devastating condition and
would never have allowed her to truly function. . I think it went to a
completely nonfunctional person .... We went to see a neuro surgeon who
talked to us about all of the things that we could expect in this child's future and it seemed so cruel.... It was so cruel and so painful and ... I think that our reasons for terminating, well mine, was a combination of not wanting to put her through suffering and not wanting to put ourselves through that kind of suffering.... I've done a lot of soul searching over ... this and trying to figure out whether what I did was about me or about her and I think it was a
combination.

Many other parents made altruistic decisions to avoid pain and suffering of

the baby. One mother lamented her decision saying, "I was going to help my baby

versus going to kill my baby." Another "felt like if we bring a child into this world

that suffers terribly because we're too cowardly to take steps to spare this child

suffering then we're not good parents." Another mother described her motherly

instincts.

All of your ... mommy stuff I guess kicks in. It is very much a protective
thing I think .... I was very tempted to let him go to term. I was very
tempted because as long as he was inside of me he was alive and I could
protect him.

This mother made her decision to terminate for the baby's sake and not for her own.

She would have much rather chosen to keep her baby.

Other parents made altruistic decisions to avoid a dismal future such as

institutionalization for a child who would need a great deal of continuous care that

could be painful. One father said,

Because more than anything the one issue that I could not put to rest was that at some point or another that child would have to be institutionalized
amongst people who did not necessarily have her best interests at heart.
And as a parent I could not look at myself and say "yeah I could do that."
If I can't take care of my child at the level that child needs it shouldn't be
here and after I died I couldn't take care of that child. No matter how
much money I left, I couldn't be there and that baby was going to need





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round the clock assistance for the rest of it's life, and I couldn't bare to do
that with such a dismal forecast for her life.

Another mother expressed her concern for the baby's future pain, "We were afraid the baby was going to live and we'd have to watch him go through all these surgeries and procedures and that's all we could think about was the pain the baby was facing." Still another mother whose baby was diagnosed with Prader Willi's syndrome chose termination to spare her child what she believed would be a very poor quality of life: "to us it was totally morally acceptable and we couldn't think of a more loving you know, when a mother decides and makes a decision for her child, that's a loving thing."

The diagnosis of the baby influenced the couples' decision making process. If the diagnosis was presented as certain death many parents chose termination to speed up the inevitable. One mother whose baby was diagnosed with multiple anomalies said, "the deciding factor for us was the fact that the ultrasound said that they could only see two chambers of the heart and I'm smart enough to know that people can't live without a heart." When certain death was not a given, the dilemma was more troubling. For a couple in their early 40s and faced with a decision for a child with Spina Bifida, the uncertainty was very difficult. The husband said,

The biggest concern that we had was being older parents. It's much sooner
that we would not be able to take care of someone with these kinds of
problems ... because this child could live to be 50, 60.... So who's going to be able to take care of him and how do you prepare for that kind of stum ...
What kind of problems would he have? Would he ... be able to work and
provide for himself or not? And really no one can tell you ... the image you
get of your child being in a nursing home not able to take care of themself
and really all alone you know, because you're either not there or can't do
anything for them and that was just really hard to think of you know. What if it came down to that? I don't know if I can you know.... How do you go on





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to your final rest knowing that's the last thing you're thinking about, who's
going to take care of my child?

Some parents made their decision as a result of self-awareness and

recognition of their own limitations. Termination would relieve them from future responsibilities that they believed they would be unable to handle. Comparing herself to others, one woman who chose termination for a baby with Down syndrome said,

I would never say to somebody who wanted to keep a Down syndrome baby
[that they were] wrong. You know that's their ... I mean they're better
people than me. I just couldn't do it, you know. I couldn't do it on a lifetime
basis.

Choosing to terminate was a decision that no one "took lightly." These parents not only had to deal with the pain of making the decision to terminate or not, but for those who chose termination, they were also confronted with choosing the type of termination procedure.

Decision on Type of Termination

Obstetricians or perinatologists presented termination options to the parents. Occasionally a genetic counselor would make recommendations, but some of these parents were painfully aware of the options. Several authors (Hohnes-Siedle et al., 1987; Marteau, 1989) found that parents' decisions were affected by how information was presented and by whom. That did not seem to be the case in this study. Two options for termination included either to have a dilatation and evacuation (D and E) or induction which meant going through labor and delivery. Both options were not available to everyone. Those closer to 24 weeks had to be induced because it was considered the safest at that point in time. Those who were





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20 weeks or less frequently were given both options. Different professionals had differing opinions. One physician said that he tried to present both the "benefits" and the "risks" of each option. As he pointed out, other factors have to be considered such as gestation of the pregnancy, availability of the procedures and whether or not you want to study the baby to confirm a diagnosis. In some instances, professionals recommended the D and E, suggesting to the couple that this would 44spare us the pain ... somehow."

I think the physicians thought that they would be sparing us some pain.
You know like they could just make it go away. And (my husband) and I
knew that there was no going away. There was no pretending it just didn't
happen. And that we didn't want to pretend that it didn't happen and as much pain as it was going to cause I think we needed not to be in denial
that there had actually been a baby in our life and now there wasn't.

Induction. The majority of the participants ended up having induction of labor and had multiple reasons for choosing this, including gestation time as well as personal reasons. Parents talked about the need to say hello and welcome their baby into the world before they said their extremely painful goodbyes. "We needed that transition of being able to hold her and say goodbye and come to terms with, with all of that." Remembrances were vital in allowing themselves and others to acknowledge that their baby had lived. Mementos of the baby were important and were usually more available by going through labor and delivery. "You have footprints and handprints and pictures and you have your whole labor story that you can think about for yourself or share with somebody else if you had a mind to."

Some parents described how being able to parent their baby, even for a short time, was more humanizing. One mother said,





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1 didn't want to do a D and C [dilatation and curettage] or anything like
that. I'm so glad that I did that [induction for labor] because you know it
was a whole baby and you know we held him and baptized him and named
him

For most, the induction of labor provided an opportunity for bonding with the baby, and for others to see the baby and recognize that the baby was a person. "I put my baby finger in his hand so that I would always know how big his hand was holding onto my finger.... He looked exactly like my husband."

Going through the labor and delivery process helped some parents with

reconciling their painful decisions. One mother who had an induction described her need for others to see her baby as real.

A friend of mine that was with me at the time said you know you've got to
do this [terminate] ... you've got to stop this . the fetus will never live
or something to those lines and I flew around.... I spun around on my heels [and said] this is not some fetus, this is my son and I have to now
make a decision for my son so it is very maternal.

This comment was similar to one made by Dearn (1998). Another mother said,

I think we really needed ... to see her as a whole person and to be a
family with her before we let her go .... We needed her to be real.... It
was very important to me that the health care professionals recognized that
she was ... our baby and not just a fetus.

The choices were painfully difficult, but on top of being difficult there were nothing but negative choices to choose from. For one father, it was very different. His wife was already at 24 weeks when they chose termination and they had no choice but to go through labor and delivery. He remembered it as being,

very difficult. I think partially because knowing the outcome was already a
negative one. To have to go through that even after we knew what was
wrong. It would have been a lot easier if that part of it didn't have to occur.





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Another father who had mixed feelings about his wife going through the labor process, left the decision up to her and recalled the procedure as "heart wrenching." One mother reflected on her own uncertainty about having seen the baby and her husband's desires to have had the opportunity to see the baby.

[My husband] wishes that ... he would have had the opportunity to see and hold the baby and sometimes you know, when we talk about it I make sure
that he knows how much the baby looked like him and things, and on the
other hand sometimes I think if I hadn't seen him it wouldn't be burnt my
mind, you know, his little face wouldn't be burnt in my mind like it is....
There is something to be said for either way to see them or not see them.

Still another father described their painful decision in choosing to go through labor and delivery.

This baby was, was severely injured and she deserved the best I and my
wife could give her and my family and that unfortunately the best that
was, was to be there with her. Just making the decision rips your heart out
but to hold her while she dies means that you at least understood your
decision. If you ... can't make your decision and live with the
consequences you're missing the point.

D and E. Induction of labor was not the best choice for an even when it was presented as such, as one woman who had a D and E at 17 V2weeks "quickly said I didn't want to deliver ... at the time I didn't think I wanted to go through a delivery and have a dead baby .... I think it was too painful at the time to think about delivering." She was offered her baby's remains following her D and E, allowing her to have a cremation and retain the ashes, which is uncommon with a D and E. Having the remains was important for her to allow her the opportunity to recognize her baby's existence. For another couple,

the genetic counselor was encouraging us to have labor and delivery
because they said if we did that they could do a full autopsy. And I just
drew the line, I'm like no, that's not an option. I'm not going through





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labor for a stillbirth. The idea of laboring and not delivering a live baby was
just too painful for them.

Parents who chose D and E needed to find a way to acknowledge or bond with their baby and say their goodbyes. Several were able to get more ultrasound pictures and a last look to say goodbye. Several couples were offered an ultrasound just prior to their D and E. One mother, whose baby had been diagnosed with anencephaly described how it was for her. "I said yes I wanted the ultrasound again. I wanted to be left alone [during] the ultrasound.... I did, I wanted to be left alone so that we could say goodbye." Her physician went one step ftirther to help this couple personalize their baby, making their experience more humanizing.

He asked "would you want to see pictures of a baby that was born with anencephaly," and I did so he went and got his books and brought those
pictures back, and I looked at those pictures and that helped put a face on my
baby I think.

The ability to gather these remembrances was in contrast to what several authors (Kenyon et al., 1988; Lloyd & Laurence, 1985; Zeanah, et al., 1993) reported in the literature. Families in their studies reported not having these remembrances.

Another couple who chose termination in two separate pregnancies for the same fatal diagnosis had a D and E for the first termination. The genetic counselor recommended a delivery in order to obtain a definitive diagnosis and the obstetrician "was saying 'no, no, no, I don't want her to go through labor.' I [mother] was saying 'I don't know what to do.... It was horrible." This woman described herself as on a "path of horror." The conflict between the healthcare professionals was overwhelming. In the end she described the D and E as "just horrible ... justthe whole situation, actually doing it, everything was just awful." She tried very hard to





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obtain her baby's remains but was unable to. This caused her additional pain and she suggested "that the hospital people need to have a better protocol for ... how to handle these very cherished babies." For her second termination of twins who ended up being diagnosed with the same disease (Congenital Nephrosis of the Finnish Type), the mother insisted on going through labor and delivery because "[fl wanted to see them. I wanted to hold them. And I definitely wanted something to bury ... even though the induction [for labor] was really traumatic,"

One couple who thought they had made it clear that they wanted to have an induction went to the clinic where their physician had arranged for them to have the procedure, only to find the doctor there only performed D and Es.

The doctor comes in ... and he's saying "take off your jeans," you know, "put your legs up in the stirrups. We'll insert the laminaria, and we'll do a
D and E tomorrow." And I said "whoa, wait a minute, wait a minute, wait a
minute," and I'm trying to discuss things with him, this is not the
procedure I want to go through. I want to be induced and he says "no, no,
no that's not what we do." And. . I said "well then this appointment is
over," and I like got up off the table, zipped my jeans, my husband is
standing there thinking what's happening. He's just kind of dazed because he's in complete grief. You know, and I'm standing up walking out of this
clinic. The Dr. actually way laid him on the way out and said . "Why
would you want your wife to go through all this pain" and he was berating him.... [My husband] broke the door on the way out. He was so mad, he
slammed the door on the way out.

One mother who had her labor induced heard other parents describing the D and E procedure at a support group. She said,

I can't imagine that. That to me is hell on earth, way worse than what I had
to go through. And all of [those who had a D and El think that what 1, the
way I had to do it was way worse than the way they had to do it.

Regardless of the type of delivery, for the most part these parents all had a need to be able to say hello and somehow have a parenting experience before saying





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goodbye to their precious babies. They needed to be able to acknowledge their child and the painful decisions they had made. Decision Reflections

Many of the parents reflected upon the decisions that they had made in the interview situation. Most of the parents interviewed at the time of their current pregnancy described their decision as I made the right decision at that point in my life for that baby." Feeling they had made the right decision was similar to parental responses described in the literature (Alder & Kushnick, 1982; Blumberg, 1975; Jones et al., 1984). One mother described it as, "we made the very best decision for [our baby] that we could have on the day with the information that we had." Although one couple who seemed adamant in the beginning that termination was right and they did the right thing, later revised their thinking and actually went through a long discerning process which included the help of a Catholic priest and a counselor to come to the conclusion that what they had done was wrong, "a sin," and in order to start healing they had to be forgiven and forgive themselves. Others struggled with the decision. One woman described her feelings of guilt as she continues to struggle with her decision to terminate. She described her feelings at times "of just total self hatred and disgust and ... I think I really did absorb the idea from Catholicism that there's never a good reason to do this. Even though I know I had a good reason." Although a large number of the participants in this study were Catholic, religion did not seem to play a major role in their decision. One nurse said,

The bottom underlying thing that's really concerning is just the
weightiness of the decision that we put on these people, that we allow
them to participate in the decision that 5, 10 years ago wouldn't have been a consideration and they do not have the external support in many cases to





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uphold that decision.... I do know though that the [parents] that have the
regrets, they are very deep and very strong and very profound so maybe
those just in my memory make more impact than the others. And
sometimes I think the regret happens because they were rushed to a
decision.

For some, the baby of their hopes and dreams was lost to them before they ever made the decision. One mother said "I feel like she was already gone by the time we decided to end her life. I mean she was gone to us in our dream." Most parents accepted the decision they made then, but could not say what they would do in their present or future pregnancy. They could only reflect back on what they had already done, because every situation is different, every pregnancy is different and parents said they are different because of their experience. One mother, speaking of her current pregnancy said, "when people ask if we would do the same thing [again], I have no idea. We're different people in a different time. This is a different child."

Consequences of Catastrophic Psychic Pain

Catastrophic psychic pain came from the overwhelming loss these parents

endured. The pain had consequences for the parents that included loss of innocence, devastation, changes in spousal relationships, fear of hoping, aloneness, and stigma. Loss of Innocence

All participants felt a loss of innocence similar to what Bryar (1997) saw in her study. One woman said, "the biggest thing besides the loss of your child is the loss of your innocence." The loss of innocence is pervasive, affecting not only future pregnancies but other areas of their lives.

[This loss had] an impact on my life all together.... I mean that impacts
every area of my life. It doesn't just affect you know, the current pregnancy
and it's better today than it was right after we terminated but the fact that you
know, if [my husband's] coming home late from work, might mean oh my





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God he was killed in a car accident on the way home. And you know it's like the worse, the worse that you can imagine happened to you and suddenly you
know well gee, you know those terrible things that you hear happen to other people can happen to me and then you like expect thenL It's like you don't
expect the good things to occur anymore.

One mother talked about,

how deep a loss this is. I mean all the different kinds of things in life that it
cuts across. It cuts across your feelings about motherhood ... and maybe
your feelings about abortion, and your spiritual feelings, your image of
yourself . There just were so many losses involved.

Other parents who had never before experienced such loss and exquisite pain

felt invincible in their innocence prior to their horrifying experiences. One mother

who had experienced the loss of two children with abnormalities said,

before this all happened I was invincible. I mean I had two perfect little girls. I had a nice husband and a nice house and nothing bad really ever
happened so it just really, reality hit. Anything can happen to anybody any day, and there's no protecting me or my family.... After [my baby] died, I
looked at people that walked around buying baby clothes and having baby
showers thinking gosh, I mean it's a sick thought but what if the baby dies?
What are they going to do with all this stuff? How could you go set up the
nursery'? You know, and it never entered their mind because it never entered
my mind [before my loss].

One father talked about his future expectations as being not, "what could go wrong,

it's what will go wrong. You know, you don't have any real expectations that things

are going to turn out good." Speaking of innocence he said, I want it back. I want

to be blissfully ignorant of all these problems." He went on to talk about wanting to

share the problems with others to warn them, but then, "do you want to take away

from people that innocence? ... Do you want to say don't think about it, but here's

what could go wrong?" He decided that wasn't good either.





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Devastation

Devastation was another consequence of the catastrophic psychic pain. To devastate, as defied in the Webster's New World Dictionary (Guralnik, 1974), means to ravage, destroy, overwhelm or make helpless. The catastrophic pain parents experienced with both the news of something being wrong with their baby and the loss of their baby or their dream overwhelmed many parents rendering them helpless. "What happened to us was just the worst of the worst." One father said, I was a naive Dad and just devastated when we found out something was wrong." Another father explained feeling ravaged. "Me months following the twins loss, every day was it's own private hell." Parents felt less than whole. One father said it's like you have a "hole in your heart that you need to fill." Another said it was a "huge sense of loss and a feeling of helplessness that nobody can ft for you. And even if you had all the money in the world you couldn't fix it."

The more intense parents felt their pain to be, the more devastated they seemed to be. A mother said, "my state of mind following our second loss, you know, I really was suicidal for quite a number of months, and extremely depressed and just . quite not in my right mind, very irrational. Another mother said, "[the baby] died and my whole world fell apart." For another couple who went through two separate terminations for the same fatal abnormality over several years, the husband described the devastation of his wife. "She has been an emotional wreck, I mean just a derailed freight train for years and ... the loss of the twins only exacerbated that."





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This devastation was paralyzing for some and affected their relationships with their living children. One mother described her feelings.

I really had a hard time.... I just lay in bed and it was kind of like you
know, catatonic just staring into space and that was hard for the kids
because they would come in and try to talk to me .... They understood why I was sad and they were sad too but they you know, it was hard for them to
see me so shut down.

And another mother explained how in her devastation, feeling so helpless, she couldn't even be there for her living children.

[They] saw me ... totally paralyzed after [the baby] died. I laid in bed for
days and days and cried.... I was really angry because not only did I lose my
daughter the first time but I felt like I lost [my living daughters]. I couldn't be their mom anymore. I couldn't enjoy them because I was just sad all the time.... I mean it's just like you're in hell. I mean you don't think you can
ever get ouL You're so low you don't know how to get out. I say I don't
have to go to hell when I die because I've been there and I have. And I'm not
there now but I won't forget what it was like, ever.

Other ways parents described the destruction in their lives was, "it alters your being," "I hit rock bottom," "the ultimate in just low," and "I just thought ... I could crawl under the bed and I would curl up in a ball and I could die, because this is really awful. "

Changes in Spousal Relationships

The catastrophic psychic pain caused not only individual changes, but

changes in spousal relationships. Some couples had to work through some very difficult times. One man described how being so overwhelmed immediately following the termination affected his marriage.

Our marriage deteriorated horribly. There was even a point where I picked
up a gun and threatened my wife with it. We had horrible marriage problems.
She was totally fi7eaked out and I was just basically having to deal with the
overload of emotions.





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Afterwards, his wife noted how out of character his behavior was. Another father described how strained his marriage relationship became after the loss of their child which many believed was the worst case scenario that could happen in a relationship.

There's no question there's been a strain on our relationship. I think there
would be a strain on anybody's. There are times when I really don't want to
see or talk to my wife at all. And that never happened before, before you
know, we lost [our baby] and I never, ever thought we'd get a divorce, I
really didn't ever. I remember ... a couple months after we had lost her and I
was at a party with friends of the family and my nephew, he's 8 years old,
actually asked me flat out if I was going to get a divorce, and I told him flat
out 'no I'm not. I don't plan to do so.' But there's no question that ... we've
gone through more trouble than we should have.

One wife described the strain after the loss as, "it's been really hard and I'm surprised that we're still together some days . because every month he doesn't know what to do with me." This woman's husband confirmed, "we came close to divorcing over the second time [of loss of baby] after what we went through." Several authors (Blumberg, 1975; V43ite Van-Mourik et al., 1992) reported marital stress and temporary separations for some couples in their studies.

One couple whose baby survived, but is sick quite often described a diminished relationship. The wife said, "I don't have a relationship with my husband.... I don't see my husband at all, hardly.... We have this 'see you in passing' relationship."

Two husbands discussed how much they wanted their wives back similar to responses Suslak et al. (1995) found. They noted how their wives had changed, they were not as they once were, because of what they had been through. "I [want] my wife back. [1] not only [lost] a child but I lost her for quite some time," and

since this has happened . my wife has really been taken away and replaced by somebody who I don't know nearly as well.... I know I can't get the old





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[wife] back, that'll never happen, but I'd like to see a merrier version of this
one ... more often.

Ultimately most parents talked about how surviving their experience and the excruciating pain they endured made their relationships stronger, consistent with findings of several authors (Green, 1992; Jones et al., 1984; Bryar, 1997). One wife said, "I knew that if we had survived that [loss of baby] intact, still supporting each other, and we felt the presence of God in our lives like we did, that we could certainly survive anything else." One father said, "In ways of course, it's made us stronger as a couple because you know ... I sit back now and I think gee if we can do this then we can get by anything." Another father described how their experience deepened the bond in their relationship.

It deepened it. It burned away the trivialities. We would occasionally fight,
just like all couples, but we would occasionally get into a rip roaring fight
about something trivial. That hasn't happened very often since then. Most
things are seen to be what they really are. If they're important we simply
deal with it. If it's trivial we just... resolve it and press on. So in that
respect I think it's improved our relationship because it really helped us see
who each other was and is, and helped [us] to see why we fell in love and
why we respect one another.

One woman also shared how the lines of communication opened up for her husband andher, I do think that our communication skills have gotten just better, better, better, better."

Fear of Hope

Fear of hope was another consequence of the extreme pain, Many of the parents were afraid to allow themselves to hope. One woman said, "I think I'm afraid to hope really. Maybe I do have a few superstitions that if I hope that, it won't come true. So I kind of avoid it." A father described limiting hope in order to avoid






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ftuther pain, CC simply wishing for more is a good way to get hurt and I've been down that road and I can't, I'm not sure if I can handle being crushed again," One woman described how her hopes "died" with the terminated pregnancy.

As soon as you get pregnant you hope you know, okay ... this one was going to be born the end of December so ... you have that hope okay. . we won't go to South Carolina for Christmas cause we will possibly have a new baby,
just the hope that you already set in your mind. . just all your hopes were
gone, you know they died.

Another father described how their hopes and desires are less now than before they ever experienced such pain following their pregnancy loss.

We talk about our concerns all the time. We leave hopes, I think we
left hopes go. I don't say we don't discuss them ever but ... they're less
of an issue. We sort of you know, it's a cross your fingers. It's like if you discuss your hopes, they're ... less likely to come true. So we, I
think we do less of that, and also, we've lowered our standards
considerably.... Our hopes, desires are less than they used to be.

Hope becomes limited for these parents after their experience with catastrophic psychic pain.

Isolation

Another consequence identified by many of the parents was that they "really [felt] alone" in their pain. One father described it as "most of my family members and friends ... treated [me] as if I should just go be on an island somewhere and when I'm better, I'll return to them-" These couples felt alone at a time when they needed others most. "There is a time early on when you think you're the only person in the world who's ever been through something so terrible." One woman who felt 44so alone and so isolated" had to drive two hours one way to attend a support group. Aloneness was experienced sometimes by a couple and sometimes by individuals.





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1 felt alone ... because [my wife] was trying to deal with her own pain ...
and my parents and everybody around us were so wrapped up in their own
grief that ... it's hard not to feel alone no matter how many people are
around you or how much they care.

One woman described a time during the termination, "I'm so grateful for [my husband's] role in this but at the same ttme I felt very alone.... I did feel a great burden that no one else could take it away from me." Another woman said, "I really felt isolated because I really needed someone who had been through what I had been through." Still, another man described how alone he and his wife felt as a couple during their termination when the nurse briefly stepped out of the room. "We did have to make the decision to do this alone and then all of a sudden the time has come [to deliver and] nobody else is there and that kind of hit me as being a little lonely."

For one woman, the isolation was directly imposed by health care

professionals who did not seem to understand how to help her. "I said I wanted to die ... and they (health care professionals) did the worst thing possible, put me in there (an inpatient psychiatric ward) isolated from anybody else.... Theywouldn't listen to me." Most felt very alone with their pain. One mother said, "I feel like I want to do something to help because it's so hard and nobody should have to go through this alone." The pain paralyzed some parents, not allowing them to talk openly concerning their experiences because of a fear of being stigmatized, thus increasing their isolation. The catastrophic psychic pain and its consequences made these parents' lives very difficult and different from what it had previously been. Stigma

Stigma surrounds the topic of termination as well as the loss of a baby by natural means. Goffinan (1963) described stigma:





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While the stranger is present before us, evidence can arise of his
possessing an attribute that makes him different from others in the category of persons available for him to be, and of a less desirable kind.... He is thus reduced in our minds from a whole and usual person to a tainted, discounted one. Such an attribute is a stigma,
especially when its discrediting effect is very extensive; sometimes it
is also called a failing, a shortcoming, a handicap. (p. 3)

One mother, whose husband was unable to be with her at the time of the

delivery, described her sense of failure as her husband met her at the airport

on her return.

When I got off the plane, when he met me at the plane with 38 dozen
roses ... my first words to him were 'do you want me to stay, because I failed? Do you want me to go back?' And then, of course we stood
there like idiots sobbing for half an hour in the middle of the airport.

She felt she had failed and said, "I still do. I will forever." Another mother

described her feelings of shame.

I felt ashamed of having conceived a baby and then two more that had a
problem. That made me feel defective, substandard, not as good as
everybody else. And also I think a big part of my shame comes from feeling
like parents are supposed to know what to do and I was the parent and the
best I could do was to come up with ok I'm gonna put you to death. I
couldn't and no matter which way I looked, no matter how desperately I
wanted there to be something that was better, there never was, both times.
That was the best option and I just feel like I failed my babies. That I just
couldn't think of anything better to do for them than that. And so yeah I am ashamed of that. Just think that a good parent could think of something else
to do, and I just couldn't, I couldn't think of anything else.

Feelings of shame and failure reported by some parents in this study were similar

to those reported in the literature (White Van-Mourik et al., 1992).

Having a baby with an anomaly and/or terminating a pregnancy makes these

parents different from the "norm." As one physician said, the stigma regarding

termination "is a reflection of our culture and ... socio-political situation." A major

issue surrounding the stigma of termination concerned the fear of judgement these





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parents had believing others could not possibly understand what they had been through. This fear of judgement included fear of others accusing them of murdering or killing their own child. One woman feared sharing her story in a support group on the Internet because, "you get fanatics on there who are calling you murderer, and ... it's like they don't even get it." Another woman felt she always had to be on guard. Concerns about fear of judgement were consistent with what was seen in the literature (Gregg, 1993; Bryar, 1997).

Because there is so much stigma around abortion I feel like I'm living a life
of a lie that you know, there's so many people and there's friends and family
who don't know the truth, because there's such an emotional circumstance
surrounded with this that you know, I like, I'm always on my toes to be
careful you don't say too much, and you know, even the fact that we didn't
tell a lot of people.

This fear of judgement lead to parents feeling unable to talk openly about

their decision and/or loss. One woman described her fear of being stigmatized as "I felt kind of like I was, you know, living in fear that I would suddenly end up with a scarlet letter." Another woman believed,

very few people understood what we were going through... And I found out
quickly the responses that ... I didn't want to tell anybody that didn't have the medical background to try and explain medically what was wrong.... I
just don't feel people could comprehend. Then we would be judged more on
instead of grieving the loss of a son, I was afraid to get into the moral of
somebody say well you killed your baby, you had an abortion, which I never,
I don't believe in abortions. I mean my faith, our faith so it's just funny
when I got put in the situation. I didn't feel like it was so called an abortion, that we really felt like we were doing it for our son versus hurting him. That
it was more grievous on us to do this to him, that we were actually trying to
take care of him.

Some parents dealt with their own guilt concerning what had happened to them. One mother described her own feelings of guilt and how she projected them.





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My family's Catholic and I just thought like my mother's going to be grossed out and offended. And just think that I'm a total sicko and whatever pain I'm in I deserve it and . of course, she wasn't that way at all. But that was just I
think me projecting my feelings about what I had done onto her. Another mother described her guilt at feeling she had killed her child.

I'm not real comfortable with the decision that we made. It's really
hard for me to even admit that because I never thought I would do
something like that ... ending your pregnancy. It's just that they call
it like, it's like, I don't know, killing your child. 'Mat's what
sometimes I feel like we did. I mean it's very hard, but that's what it
is.

Another father talked about his wife's feelings of guilt. "I feel that she felt like she was ashamed and that there was something wrong with her." The impact of feeling stigmatized was so great for this couple that they moved from the neighborhood when their neighbors inadvertently found out about their loss.

Goffman (1963) discussed two types "of individuals from whom the

stigmatized person can expect some support" (p. 28). These included the "own" (p. 28) who share the stigma, or in this situation have been through a similar circumstance, and the "wise ... whose special situation has made them intimately privy to the secret life of the stigmatized individual and sympathetic with it" (P. 2 8), such as some health care professionals. One woman sought out a support group, the 46 own" where she would be with others in a similar situation, but was afraid to share her whole story at the first meeting.

It was real interesting people would go around and if they felt comfortable tell their story and finally well after the second meeting I went in and I told
my real story, not that I had a baby that was stillborn, but we had a baby you
know, that had problems, we terminated. And the next thing I knew after I told my story people that had . already told their story were saying yeah, that's our story too, after they had just got done saying that their baby was
stillborn.





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Another woman, who, along with her husband, was in the medical field, also feared being judged by others. She described how she could talk about the termination only to medical friends, the "wise," because

they understood the medical part which I think being medical they
disassociate some of the social, you know treating patients you don't give
your social views when treating, when they make medical decisions. I think
they [medical friends] were a little bit better about not putting in their
opinions on [the] social issues of it [termination].

This stigma causes a change in the individual from that moment on. Goffman (19 63) suggested,

when the individual first learns who it is that he must now accept as his
own, he is likely, at the very least, to feel some ambivalence for these others will not only be patently stigmatized, and thus not like the normal person he
knows himself to be, but may also have other attributes with which he finds it
difficult to associate himself (p. 37)

One father described becoming a member of a great personal loss club, "the own":

we became members of the club we never wanted to join.... It's alinost like it's a taboo subject, but the minute you had a loss or a miscarriage or
something you know we found out we have a relative through marriage
that has had 10 miscarriages. You never find that out until you are a
member of the club.

Support groups were very important to some people because of needing to have others to talk to who could possibly understand what they were experiencing. Ahnost all became involved with a support group, at least via the Internet.

The stigma not only affected those who chose to terminate, but also those

parents who had a child with an abnormality that made the child different from other children. One mother with a baby with Spina Bifida felt rejected and stigmatized by some of the other mothers she knew in a church group.

A lot of the mothers don't talk to me anymore because they don't want to
have to explain to their children. They just completely dropped out...





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Some of them dropped out when ... [the baby] was born because they didn't
want, [my baby] is G-tube fed and every couple of hours you have to feed her. Well it doesn't bother me, and if it doesn't bother the majority of the
moms, I'm going to feed her. I'm not going to go in a room and bide myself
because this is [my baby] you know, we're praying together. This is God's
gift you know. You would think that everybody would be on the same wave length, but they're not.... And wouldn't you know it, the very first week I took her to church some lady asked me not to sit in front of her. I said well
then you can kindly move yourself away from us and you can go talk to
Monsignor. And she was so upset with me and she did, she moved her and
her children away. But think of what she was doing to those children by
showing them. She's showing them that you know this isn't right, this isn't
normal, hey look, there's a baby, you can't do that in church, she doesn't
belong here, let's leave. And I don't understand.

Because of the stigma surrounding the termination issue, the loss issue, and the birth of a child who was different, most parents tended for the most part not to share their experience openly. If they did share their experience, they chose the people carefully. This finding was consistent with the findings of several other authors (Green, 1992; Gregg, 1993; Hodge, 1989; Suslak et al., 1995). When asked why she thought parents chose not to disclose information on termination one nurse said,

That people won't understand, abnost universally, you know. Here we
allow [the parents] technologic information to force them into a decision
society doesn't understand or support. It's very hard for them.

For almost all of the participants in this study, their past pregnancy became a secret, held close, shared in limited situations.

Summary

This chapter described the basic social problem of catastrophic psychic pain. This pain began with the diagnosis of a fetal abnormality in these parents' previous pregnancies. It was unexpected, intense, and never ending. Parents had to make painful decisions regarding termination and type of delivery. The pain had





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consequences for the parents that included loss of innocence, feelings of devastation and isolation, changes in spousal relationships, fear of hope, and stigma.













CHAPTER 5
MANAGING CATASTROPHIC PSYCHIC PAIN

In this chapter I will discuss how parents were able to move forward, begin to think about a subsequent pregnancy, become pregnant, and forge through their subsequent pregnancy. In moving forward towards a subsequent pregnancy, the previously experienced catastrophic psychic pain came back to the fore-front for these parents as they were all too aware that what had happened to them in the past could possibly reoccur. This chapter discusses the process of how the parents managed their catastrophic psychic pain in a subsequent pregnancy. Parents put forth a tremendous amount of emotional labor (Hochschild, 19 83) to work through their pain to begin to heal and manage the recurrence of their pain and/or to avoid future pain enough to actually move forward and begin to think about getting pregnant again. "Emotional labour is hard work and can be sorrowful and difficult. It demands that the labourer give personal attention which means they must give something of themselves, not just a formulaic response" (James, 19 89). As one mother said, "I was so worn out all the time because we were carrying around all this."

What should be a happy time, a subsequent, often planned pregnancy, was fraught with tremendous stress and tremendous fear. "It's not happy and babies and bottles and diapers." These parents have lost their innocence, suffered devastation, experienced changes in their spousal relationships, are now afraid to hope, have felt



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isolated, and live with the stigma of their decisions and their losses. The subsequent pregnancy for most parents was "a very scary thing." Many authors reported markedly increased anxiety during a pregnancy subsequent to a loss (Armstrong & Hutti, 1998; Borg & Lasker, 1989; Phipps, 1985-1986; Statham & Green, 1994; Stierman, 1987). Four major sub-processes are useful in discussing how parents in this study managed their catastrophic psychic pain: emotional armor and going forward, limiting disclosure, suspending emotions, increasing attachment to the health care professionals and others. Social structural issues also affected management of the catastrophic psychic pain.

Emotional Armor and Going Forward The catastrophic psychic pain these parents experienced was not easily put

behind them The intense fear of experiencing additional pain caused them to look at a future pregnancy very differently from their previous pregnancy. Tremendous fear of the possibility of having to repeat the experience caused these parents severe anguish consistent with the findings of Borg and Lasker (1989). They had to steel themselves and manage their pain sufficiently to get to a point where they had enough strength and courage, in essence armor, to face another termination decision with a future baby. "The question would obviously have to be, any time you consider conceiving you also have to consider terminating, which is real difficult." One woman who had an immediate desire to get pregnant again following her termination "realized we can't even think about getting pregnant again until we can conceive of going through this whole nightmare again" which was consistent with findings reported by Borg and Lasker. This sentiment was shared by many of the