By McCoyd, Judith L M
Abstract Prenatal diagnostic techniques both enable and force women and couples to make decisions about whether to continue a pregnancy where the fetus has an anomaly. Few studies have explored the decision-making and bereavement processes of women who terminate a desired pregnancy after the discovery of a fetal anomaly. This reports the qualitative results of a study designed to explore these processes while placing them within the context of the societal milieu. Findings are reported as themes that emerged from the 30 intensive interviews conducted with women at varying stages after this experience. These include mythical expectations based on denial that anomaly could occur, misconceptions about the nature of prenatal testing and inaccurate expectations about the experience and duration of grief. Further, the contradictory norms in society are defined as creating additional dilemmas for women as they attempt to gain support and understanding following their loss. Suggestions for how providers may assist women with their grief are incorporated.
Keywords: Prenatal diagnosis, abortion, pregnancy termination for anomaly (TFA), perinatal bereavement, psychosocial response to abortion, feeling rules
Prenatal diagnostic techniques both enable and force women and couples to make decisions about whether to continue a pregnancy where the fetus has an anomaly. These decisions are considered individual, yet they are made in a medical culture that pushes for the most sophisticated diagnosis and treatment , often within a culture such as the United States that stigmatizes abortion. Kersting and colleagues  comment on the paucity of studies of psychosocial response to termination of pregnancy due to fetal anomaly (TFA/TOP) and add to the knowledge base via their survey. Most current research reports quantitative methods which use psychological scales to deduce mental health effects of TFA [3-6] or utilize demographics to assess likelihood of termination given a certain severity of anomaly [7-11]. Few have explored the processes of decision-making and/or mourning [12-16]. This article reports a qualitative study of women after TFA. Qualitative studies allow for exploration of the medical decision-making process and emotional responses in more depth for each individual respondent. Although quantitative studies are generalizable and capture trends, qualitative studies capture the rich, nuanced, detailed aspects of the experience and elaborate on the process/es involved. They provide more information for understanding clinical aspects of the experience of patients as they traverse the medical system from prenatal care to diagnosis to termination.
Women typically struggle to make decisions about whether to continue an affected pregnancy while isolated, frightened, and confused about the “feeling rules” [17,18]. Women desire these pregnancies and bond with the offspring they hope to birth, but then decide to terminate the pregnancy when they discover the anomaly. This dilemma is exacerbated by the fact that implicit and contradictory societal “rules” tell women that they must love their fetus from conception, but that they should not deliver a disabled child. There are misconceptions on the part of family members and medical staff that those who terminate a pregnancy will not experience grief [ 19], yet research has consistently shown that grief and trauma occur [2-6,12,15,16,20,21].
This study was designed to explore how women, with little normative guidance, experience and make sense of their pregnancy loss within the framework of society, medical culture, and relationship with family and friends. The woman’s psychological processes as she bonds to, and then separates from, the fetus are explored and analyzed within the context of prevailing societal expectations. This article describes the themes that emerged from intensive interviews with women after TFA.
Intensive interviews about decision-making, grief and supports were conducted with 30 women . Each woman also completed the short form of the Perinatal Grief Scale [23,24] for purposes of triangulating quantitative data with the qualitative data to enhance rigor. Qualitative interviews with four physicians and a focus group with perinatal social workers provided additional opportunities for triangulation of data. Twenty of the interviews were conducted by e- mail, a new method  which allows more longitudinal qualitative data to be collected. All interviews yielded rich data about the way women across the United States have experienced TFA.
The data collection took 10 months, extending from November 2001 to August 2002. Women were recruited via letters of invitation distributed by obstetricians and perinatologists in the researcher’s geographical area. The same letter of invitation was posted on a web site devoted to supporting women who have “interrupted a pregnancy due to fetal anomaly”.
There were two Hispanic women and one Asian woman in the all white study group. Age ranged from 21 to 45, with most respondents between 31 and 35. One quarter were high school graduates, half had Bachelor’s degrees, several had Masters and five had J.D.’s, M.D.’s or Ph.D’s. This may reflect the fact that most women in the US who have access to prenatal diagnostic testing and subsequent TFA tend to be from the upper middle and upper classes and have insurance that will cover these expenses. Anyone receiving federal funds (Medicaid, military coverage, state and federal employees) may not receive coverage for terminating a pregnancy. Nearly all subjects identified spiritually in some way, including 10 Protestants, eight Roman Catholics, and five Jews. Other faiths were also represented.
The theoretical sampling strategy originally was limited by inclusion criteria of:
(1) having a desired pregnancy within a committed relationship;
(2) where the fetus was found to be anomalous;
(3) and the decision was made to terminate the pregnancy between the 16th and 24th weeks of estimated gestational age (EGA);
(4) and this experience occurred within the prior year.
Modifications of the theoretical sampling strategy were made after saturation of the themes occurred. It became clear that sampling women who had terminated both earlier and later than the 16- 24 week window would add further data of interest. Additionally, after several women responded to recruitment letters who had experienced their termination longer than one year before, the researcher interviewed them to gather further data about the way the process of grieving occurs over a more extended time after a TFA. One theoretical category that was not able to be “filled”  was that of someone who experienced very little to no grief after TFA.
The interviews were all transcribed verbatim and coded for emergent themes using grounded theory methods . The themes emerged in ways that were framed by ecological systems theory  via analytic induction and the theoretical sampling strategy [29- 31]. As in all qualitative research, the goal is not randomization and generalization in the traditional quantitative sense, but a rich description via narrative data and analysis of the themes that characterize the experience of a population.
The following section reports the themes that emerged from analysis of the data and fall into two broad categories of results. The results from the quantitative scale, the focus group and physician interviews were consistent with the findings reported here. The first category, “mythic expectations”, relates to the set of expectations that individual women have as they become pregnant and soon after the termination. The second category, “exquisite dilemmas”, relates to the dilemmas that emerge from the women’s narratives as they consider their experience within the societal and medical context of their lives. These expectations and dilemmas are exemplified with quotes that capture the themes that emanated from the study group more generally.
Women do not arrive at ultrasonographers’ or perinatologists’ office with a “blank slate”, but with adherence to a set of expectations, derived primarily from societal messages. These create a context in which the actual diagnosis of a fetal anomaly is not only traumatic in and of itself, but is also in direct conflict with the myths and expectations with which they arrive. These mythic expectations fell into seven categories.
Our baby would be fine. Women who cope well with pregnancy must use a certain degree of denial about the possibility that something could go wrong with the pregnancy. For the vast majority of women, this allows them to cede control of their lives to the momentous changes occurring in their bodies and social relationships. For women who have the experience of something going wrong however, their beliefs about the way the world works are called into question. Often, this is the first “bad” thing that has ever directly affected the woman and she must expend energy overcoming the denial in order to begin to process the fact that a diagnosis has occurred and requires that she actively make decisions. Zelia  shows how decisions made previously based on denial quickly are revised:
After our country was attacked on 9/11,1 felt ready to try again. My husband is active duty Air Force, and I knew he was about to “get busy”. So I went off the pill on Oct. 1 and by the end of the month I was pregnant. We were so happy. Because of my age, there was a 1/ 130 chance of a chromosome problem. And after a healthy daughter, I was sure we would have another healthy child. The result of the AFP was devastating: 1 in 10 chance of Down ‘s Syndrome. I always thought I would not have an amnio, we are Catholic, !changed my mind in an instant. I had to know if my baby was OK. A respondent who has a Ph.D. in a biomedical area said:
I decided to put the thought [that something could go wrong] out of my mind given the odds were overwhelmingly in our favor for a healthy baby. I was still in my early thirties and was the picture of good health. I was taking every step I could to ensure an ideal pregnancy. Besides, we had no history of abnormality in either of our families. These things happened to other people.
This quote and the academic credentials of its speaker reveal the powerful nature of mythic expectations to negate cognitive knowledge about the nature and purpose of prenatal testing.
Many expressed a similar feeling that by following the rules of good prenatal care, they have “contracted” to receive a healthy baby. Lorrie said:
I think Matt and I had the feeling that most parents do-no history of birth defects in our family, we are young and healthy, I wok prenatals and got good care, ate right, etc., so that meant that our baby would be fine.
The combination of generally healthy denial and a sense of contractual entitlement combine to make the diagnosis of an anomaly even more traumatic as expectations are violated.
I thought I was home free- no miscarriage in the first trimester. Many women are aware that early miscarriage is a possibility [33- 35] and nearly all in this study asserted some version of this statement. In fact, if they consider a potential problem at all, it is that they expect that a miscarriage could occur “if there is something wrong with the baby”. They often breathe a sigh of relief when they pass the 12th week as they believe they have dodged the potential for miscarriage. Ricki had a miscarriage previously and had little idea that her next pregnancy would be affected by spina bifida:
We had had a miscarriage a year earlier, so we were urn, I think holding off on getting attached to the baby in the first three months because we thought that our baby ‘s problem would be miscarriage, that would be the thing to be afraid of, so when three months passed, we were overjoyed.
There is an embedded myth that if there is a genetic or other anomaly, the pregnancy will be spontaneously aborted. Women often believe that the passing of the first trimester means that the fetus must be healthy. Tracy commented:
I think women are trained to be at least a little hesitant about their pregnancies until the first trimester is over – most everyone I know breathes a sigh of relief when they make it past that hurdle. I bet most women feel that if they don’t miscarry (by then), the baby must be fine because otherwise their bodies “would take care of it”. I know I felt that way. So second trimester findings come like a two-by-four to the head!
Once again, the violation of the mythic expectations and the assumptions embedded within adds to the level of distress as medical beliefs come into question.
I wouldn’t terminate anyway. Women who are still operating under the denial mentioned above also have the luxury of believing that they would never join the ranks of the women who would terminate a pregnancy. Indeed, many respondents were quite vociferously “pro- life” prior to diagnosis and struggled not only with their grief, but with the fact that they had asserted “I wouldn’t terminate” and then go on to do precisely that in the face of an actual diagnosis. Tracy (who terminated for Down’s Syndrome and cardiac anomalies) reported:
… my husband and I thought we would keep the baby if it was ‘just Downs’. I even decided against the triple screen test because I knew I would keep it… But there u nothing like hearing those words to your face, and I am no longer confident what I would do in that situation. I never speak for myself anymore unless I’m actually in the situation because it’s so, so hard to know how you would actually react. Reality of the fetal anomaly news hits so much harder than conceptual thinking takes into account.
Indeed, one respondent had been the chair of her state’s Right to Life chapter. Olina expresses a belief that one third of the women had – that only unwanted pregnancies were terminated and that, by extension of the logic, they would never terminate a pregnancy because these were desired pregnancies. She says:
When the doctor suggested I consider terminating the pregnancy, I grew furious. As a married woman who desperately wanted a child, and as a Christian, I had never given much thought to the abortion issue. I assumed that only women with unwanted pregnancies had the surgery. I wanted my twins to live. I kept thinking of how this was just not happening to me. There was such pain in my stomach, my soul really just throbbed and ached. I can remember how that felt, even right now. “We’re not going to do that”, I thought. “There’s no way”.
Even women who assert that they are pro-choice often made the above assertion believing that they upheld other women’s rights, but would never utilize that option themselves. A woman is confronted with the fact that she is, indeed, someone who would (and did) terminate a pregnancy.
Testing is nothing to worry about. A corollary to the idea that one would never terminate is the expectation that testing is nothing to worry about. Indeed, medical providers often reassure women, despite the fact that testing is for the purpose of identifying poor outcomes. Nearly all the women in the sample (27) reported doctors and nurses who told them there was “nothing to worry about” or that everything would be fine. Women then felt betrayed by the medical establishment and felt that their expressed fears had been unheard and dismissed when they had validity. Adele had expressed multiple fears to her obstetrician and been reassured constantly until she arrived in the hospital emergency room with vaginal bleeding:
They drew blood and apparently my ph (I hope I have it right) was not good. I was told by a nurse that I was probably going to lose the baby that night and to collect what came out for testing… The previous week, my OBIGYN told me the chances of a miscarriage was so small because of how far along I was, now we were hearing this… The ultrasound report was not good or normal, as I was told… So, Monday came and I called my doctor. I did not tell him I had the test results, and I really don’t know why, but probably because he delivered my second child and I really liked him and didn’t want to have a confrontation with him. He told me no, I was not going to have a miscarriage, that the hospital nurse was wrong.
The reassurances continued for another week until she was finally told that there were signs of “a syndrome – I can’t remember the name” and that it was unlikely the fetus would survive. Breena was pregnant for the first time and had expressed fears about her pregnancy because she had been in Manhattan on September 11, 2001.
Another doctor saw me and said everything was fine, and I took the AFP test then because it just seemed like I should. I mean, everyone takes it and she said ‘nothing to worry about’ and I didn’t give it a second thought. It was just OK. So then the doctor called me on Monday night and said my AFP was a little high and she also said there’s a high rate of false positives so there’s no needtoworry. And I said, ‘NO NEED?’And I was supposed to have the ultrasound that same week… the fun one where you find out the sex and all. So it took a few minutes to register that it could mean a problem.
When medical providers acknowledge that there could be something wrong and that the testing is designed to explore such a possibility, women can begin to use anticipatory coping strategies and to form more realistic expectations. Women who enter the testing expecting “run” and information about the sex of the fetus often had the most difficulty with feelings of betrayal.
The right decision couldn’t possibly hurt this much. Once women decide to terminate, they move into a period of shock and numbness that is protective during the days or weeks until the termination procedure is done. This protective numbness often extends into the first days and even up to 2-3 weeks after the procedure. The vast majority experience intense grief and guilt in the following days and weeks, peaking at 3-6 weeks after the procedure. They describe “just wantfing] to die” or “feeling crazy”. This is a normal aspect of intense grief inspired by loss , however many women interpret these feelings to mean they must have made a poor decision. They implicitly believe that the “right” decision would not have caused such pain. Felicia recognizes the fallacy in this only after meeting with other couples who had TFA’d:
When you feel that bad, you think you made the wrong decision. And to look around the group and see other people feel that bad, and that first night you’re thinking, ‘Wow! We all made the wrong decision – look what a bunch we are!’ And then you go back and you start questioning other people’s lives in addition to your own decisions. But it breaks in -just because we all feel really bad DOES NOT MEAN that we’ve all made the wrong decision.
Frances recognized this dynamic, and its implications, for herself, but not until two years after her loss. She wrote:
In the days that followed, I could not eat or sleep. I was obsessed by the idea that he was out there somewhere, cold, hungry, frightened, and looking for me. I cried endlessly over his photos [ultrasounds]. In my more hysterical periods, I would scream over and over that I wanted my baby. I was convinced we had made a mistake. The right decision could not possibly hurt this much… It took a long time before it occurred to me that had we continued with the pregnancy, I still would be crying and in agony. I would be mourning the healthy child we would not be having, mourning the son of life my son would have to face. Whether we had continued the pregnancy or not, I would be crying over my son for the rest of my life. I now realize the tragedy of the situation isn ‘t so much that my son ‘s life is over. It is that he had a severe anomaly. It is a critical rinding that more than three quarters (22) of the women in this study “just wanted to die”. Sarah says “I felt I had no purpose in life anymore. Life had truly lost its meaning. My body was screaming for motherhood and my baby was gone”. Although they eventually believe they made the “wise” decision, shortly after implementation of their decision, they often seem to cope with varying levels of passive suicidal ideation.
By the time of the first doctor visit, “the healing would be all done by then”. In a society of quick-fixes and the popularity of simple approaches to complex tasks (see the How-to-do-it-for- Dummies books ), women often recognize that loss will entail grief, but they also expect that the grief will follow a set of stages and be done quickly. Many believe they will feel better by the time of the first physician visit after the TFA. Since most find grief intensifying for the first 3-6 weeks and lasting until the due date , this is an expectation that leads women to believe there is something wrong with their grief experience. Felicia was able to describe this well:
Daniel Pier husband] had said to me through this process, ‘just wait until vie go see Dr. N for the check-up’ kind of like it was a touchstone and I would be all better. Kind of like the healing would be all done then – and I bought that, because I wanted to believe it. So after I wasn’t better by then, I got back in touch with the genetic counselor and said ‘could you give me those names… I need those names’ [of counselors and support groups]…. And I talked to my friend Diana last night and she sent me this email that says something like ‘Felicia, I was operating on all my cylinders today – physically, emotionally, spiritually, intellectually’. And I thought, OK, if it took her from March to July to work on all her cylinders, it’s all right that I’m not there yet. Knowing her own situation and what she had to go through gives me the validation… it’s going to take awhile. It doesn ‘t go away when you go for the follow-up check up”.
The work of Kubler-Ross  was ground-breaking: most in this study were aware of her work and the stages of grief she theorized and they expected to “work through them” in a relatively brief period of time. Grief is seldom informed by accurate expectations about the length and depth of the experience [36,39], but chosen losses are often dismissed and expected to entail less active grief. Yet all in this study experienced some grief, with the majority exhibiting grief reactions quite similar to other types of perinatal bereavement [19,40-43].
I was very afraid of running into someone who would pass judgment. This statement is a mythic expectation that defines the milieu in which the woman sees herself. This then leads her to be secretive about the experience she has been through, reluctant to seek support from friends and family as she processes her grief, and isolated at the time she is most in need of empathy . The women who take the chance to talk to others about their experience most frequently met less criticism than expected or were able to utilize defenses if judgment did occur. Ricki comments:
I was looking for things to read at first, became you’re not quite ready to expose yourself to people yet: you’re still afraid of judgment -you ‘re just afraid of everyone, because you don’t want anyone to know. And telling people is hard and each time they don’t reject you, it feels great, but you’re still very much in your shell – so reading is good.
The stigma of abortion, particularly in the US, heavily influences women’s grief process as they harbor a mythic expectation that they will be judged negatively. Yet, without risking this judgment, women are left with few supports and little ability to mobilize their own defenses against the internalized sense of stigma they often develop. Marilyn talks about refusing to divulge her story to anyone:
I do think that bearing the secret was an additional stress on me. No question about it, but telling them the truth would have, or so I imagine[d], be additional stress as well, just a different kind of stress.
Women who take the risk of pushing past their reticence frequently find the support they need from others. Ironically, in the face of harsh judgment, three women were able to mobilize the righteous anger they needed to reject internalized stigma.
Down ‘s syndrome was the worst that it could get. A final mythic expectation is the idea that Down’s syndrome is the only serious anomaly that is diagnosed and is the worst scenario. Respondents commented that they assumed that since Down’s syndrome is associated with older ages, they must be safe when they are younger than 35. Yael was 34 when her fetus was diagnosed with a variant of Ivemark syndrome (missing pancreas, spleen, gonads):
It’s just the whole – everything you hear and read and see, it’s like when you’re 35, something happens. Something happens at 35 and you’re going to have a baby with Down’s syndrome, or whatever. And honestly, before all this happened, I thought Down’s syndrome was the worst it could get.
Breena was 31 years old when her female fetus was diagnosed with Triploidy:
I said to the doctor, like I knew trisomy 21 and I’d learned about 13 and 18 and I didn ‘t know if you could have like 22, but I never heard of all of them. And I asked her and she said “Oh, that’sthe worst. I don’t like to compare genetic conditions, but this is really bad. The average lifespan of a triploidy baby is two hours. And to tell you the truth, with your baby’s condition, we’re shocked that she’s still hanging on “. … Now I know all the things that can go wrong. Six months ago, I thought Triploidy was the worst thing that could happen to anyone, but now I realize that they’re all horrible in different ways.
Some women in this study had the unfortunate education of finding out about diagnoses such as trisomy 18, triploidy, hypoplastic left heart syndrome, and Ivemark syndrome. Others found that the less serious anomalies (such as Klinefelter’s syndrome and others that are not incompatible with life) create a further difficulty in making decisions that feel ethical in the face of uncertainty about the levels of impairment. When women have considered the possibility of fetal anomaly, they typically consider Down’s syndrome; when they discover another anomaly, they are in shock that other anomalies occur.
The mythic expectations above relate to a woman’s individual beliefs. These intersect with a set of dilemmas that are inherent in the contradictory norms and feeling rules that society prescribes. These then exacerbate the basic dilemma of having to make a decision about whether to end the existence of a loved entity in order to spare it from a perceived worse existence on earth.
The dilemma of conception and bonding
Dilemmas of pregnancy and the experience of TFA begin before an anomaly is even diagnosed. Before a woman becomes physically pregnant, she is often “a little bit pregnant”  or has already started her reproductive story  and begun to bond and fantasize about an entity that is purely in mental form at that point. Carole describes this:
For me, I started planning for that baby long before I was even pregnant -1 stopped drinking, cut down on coffee – made life style changes in anticipation. Then, from the beginning of the pregnancy, we are encouraged to prepare – buy this, buy that, hearthe “horror stories”, accept the life inside you – don’t do this or that – the focus of my life changed as I became the vessel (for lack of a better metaphor). Then to find your child is not healthy – it is unimaginable.
Feeling rule prescriptions encourage early prenatal bonding that focuses on the “life” of the fetus. This active “conceiving” process of creating a view of the fetus as one’s child, even prior to its physical conception, is underway as women follow typical pregnancy behavior in US culture . Finding out sex and creating an identity is part of this as Erin shows:
We also wanted to see the lab results, just to know for sure. And we hadn ‘t wanted to know the sex, so Ellen copied the lab results and put a sticky note over the sex, but the sex showed through the sticky note and as soon as she walked out, I said, “It’s a girl, it’s a girl” and he said “yeah, I know” [crying and pause].
J – Why had you decided not to find out the sex?
E-I don’t know – trying to stay detached and trying not to put an identity on the baby. Which is, I guess, leading to the naming part, because then it felt like we should give her a name. But it feels sort of dual; first, once I name her, then I know she’s really gone / crying openly/ and the other thing is, it makes her more of a personality or a person who ‘s gone.
This same behavior opens the women to higher levels of grief and guilt when a decision must be made. Sarah talks about how this bonding impacted her grieving:
When we found out we were having a son at 19 weeks, he became part of our family. He was given a name and we bonded with him immediately. We had plans and dreams… Jared was a living, breathing little baby to us, in life and in death… We thought of him as our son, our first child and that he ‘Il always be. I remember some of the cruelest comments were regarding his name. “Why don’t you save the name Jared in case you have a living child”. Jared was the name we gave him and it was his and nobody else ‘s. The dilemma of conception and bonding means one must either breach the rules of early bonding in order to remain emotionally distant until the fetal health assessment, or one must be vulnerable to high levels of emotional pain if a decision to TFA must be made after becoming attached to the fetus.
The dilemma of testing
Medical anthropologists in the US and around the world have found that ultrasound screening is typically presented to pregnant women as a “fun” experience, a way to “see the baby” and possibly learn its sex [46-48]. They find that ultrasound technologists frequently view “promoting bonding” as one aspect of this form of prenatal screening [49-52]. Victoria describes this:
You see, I saw the baby at 7 weeks and it was just a little heart inside a blob. Then the day of the amnio and level II, he was a baby. I saw the baby and I forgot why I was there. I just saw my baby moving around. He looked normal to me. Then she asked us if we wanted to know what we were having. As she said this, I could see for myself it was a boy. I had wanted a healthy baby first and foremost, but deep down, I wanted a boy for Byron. Then as they did the scan and saw the indicators for Downs, I just stoned sinking… 7 am glad I got to go and see the level II. I guess I knew it would be the last time I would see him. I have to stop here a minute -1 am a little bit overwhelmed all of the sudden – OK, so I guess I feel that I was brought closer to him, but then it also made it more difficult because I knew what was going to happen to him.
Indeed, Gray  comments “the ultrasound machine not only represents the child, it helps to make a child of the fetus, something that used to happen at birth” (p. 92). Prenatal testing is viewed as a “way of getting to know the baby”, rather than acknowledged as a fetal health assessment tool. As obstetrical care providers, we often take the view that promoting bonding is always good. Even so, this exposes the woman to even greater emotional stress in cases where decisions must be made about whether to continue the pregnancy. Zelia shows how she experienced this:
Ever since my first pregnancy ended in miscarriage at 10 weeks, I have tried not to bond with my babies prenatally. I know that sounds awful, but I am a pessimist and it is hard for me to be positive after all of this… I really did not worry much until the AFP came back – then I stopped touching my belly and tried to ignore every movement of the baby… I do not recall wanting to look at the ultrasound screen during the amnio, and my doctor kept saying “the baby looks great” and I wished he would just shut up.
Consenting to prenatal screening or diagnosis is assumed to be a sign of taking good care of the pregnancy and is hoped to guarantee a good outcome. Women enter the procedures with a sense that they are getting the best prenatal care, and ready to enjoy a bonding experience. When they are told of an anomaly, they go from expecting fun and bonding to having to consider ending the pregnancy. Ricki describes this:
I guess I took it for granted. I mean, everyone gets an ultrasound now. It doesn’t seem like something you do to look for health things, it seems like a fun thing you do to get to see your baby, so – even though I know it’s not, it really is for looking, but I guess I just took it for granted.
The only available medical response to most diagnosed fetal anomalies is the socially stigmatized procedure of abortion. Barring the option of fetal surgery (not useful in genetic disorders), women are confronted with a choice: they can either deliver a baby with significant health problems, or terminate the pregnancy in a society that stigmatizes such an option. Their consent to testing has led them to a decision where there are no good options.
The dilemma of choice
Women are told at the time of diagnosis that they must make a choice about whether to continue the pregnancy. Choice implies that there is a good option, yet neither choice will allow the mother’s goal of a healthy child. Women expect that there must be a good or ‘right’ choice and instead are confronted with a true dilemma- “a choice between two evenly balanced alternatives, both of which are usually unpleasant” .
Additionally, the word “choice” has connotations connected to the abortion debate in the US. Yet, the polarized “camps” of abortion have no room for women in this situation. The pro-choice group cannot accept the love the woman feels for the entity she calls her “baby”; the pro-life group cannot condone the woman’s willingness to terminate the pregnancy. After complaining about “pro-lifers”, Nanci says:
The pro-choicers aren’t much better. It’s hard to use people like us as political propaganda when we freely admit that we aborted our BABIES. When so much of the debate is based on when does life begin and when we proclaim that our babies were alive and are our children. That makes it messy.
Neither group will embrace a woman who is emotionally attached to her “baby”, but who is also willing to consider (and indeed follow through on) having an abortion. The women are left with little support and no advocacy group to embrace the sort of “choice” they must make. Even so, for those who receive support from friends and family, the assurance often fails to comfort. Frances says:
I also am bewildered when people assure me “I also would have ended the pregnancy”. A decision like this is ultimately based on a thousand unanticipated and very personal factors unique to your exact circumstances.
The simplified poles of the abortion debate in the US leave no room for the complexity and uniqueness of each woman’s decision.
The dilemma of identity
Once an anomaly is diagnosed, a dilemma of self-perception arises. The woman must choose between the identity of being the mother of a disabled child or of becoming a bereaved mother. Many friends and family send mixed messages about whether a pregnant woman is viewed as a mother at all, often giving Mother’s Day cards and gifts prior to a birth, but withdrawing recognition of mother- status if the woman does not go on to deliver a baby, as Wendy describes:
That first Mother’s Day was so hard. The second Mother’s Day, after I was pregnant with Walt/her healthy second son], my mother said, “Maybe next year, you or your sister will be a mother”. And that set me off. And I said “Well, what am I now?” and she said “Oh stop, you’re just a woman who lost a baby”. And I said, “Well, I was a mother last yearwhenyou all gave me gifts”. My mom just gave me this look and she said, “Well, at that time we thought you’d be a mother”- so it was a big huge fight. So, OK, now I’m recognized as a mother.
There is an additional quality to this dilemma. “There is a feeling within US culture that ‘good’ mothers do not have ‘bad’ babies” [55,56]. This means that women who have children with disabilities, especially those diagnosed prior to birth, are breaking the rules by giving birth to those children [57,58]. Nevertheless, women who elect to end the pregnancy are not recognized as mothers and are frequently judged negatively for having a stigmatized medical procedure. Their dilemma consists of needing to decide whether to become the mother of a disabled child (a “bad” mother) or of not being recognized as a mother and branded with the stigma of having an abortion. Victoria says:
It is so easy for them [anti choice people] to say that what I did was wrong, but they are not the ones who have to watch the baby and my other children suffer. Codey would never have left the hospital. He would have been connected to tubes and wires for as long as he was alive. It doesn’t seem humane to me to do that to a baby. They don’t think terminating is humane. I guess everyone is entitled to their own opinion. It is one of those issues people have strong beliefs about… I guess it comes down to “unless you have walked a mile in my shoes”.
The dilemma of disability
US culture claims acceptance of all people. Laws protect people with disabilities, despite the fact that little support is available to help people who have fewer opportunities to make a viable income. Women are once again faced with a dilemma. They experience the love they have for the fetus, but they also struggle with the meaning of not accepting a potential child with a disability. Frances describes her struggle:
My husband and I were faced with a moral dilemma no person should ever have to face. Do we sentence ourson to death, or do we sentence him to a lifetime with a severe abnormality? These were our only options. Either choice would lead to tremendous suffering and regret. I have heard this situation described as choosing between having your left hand or your right hand cut off. Having this knowledge about our son forced us into making a decision one way or the other.
Women feel that if they were more capable, good, or loving, they would be more accepting of a disabled child. Even if rejection of disability is not a factor, women realize that they and their families will be required to handle the burden of care, economically, physically and emotionally. They are unwilling to knowingly take on this set of challenges. Beatrice epitomizes this:
I have guilt for not being the kind of person who could parent this particular type of special need. There is a lot about this [chromosomal] deletion that looks like a mental illness. I grew up with a sister who is schizoaffective. I have a lot of fear about that… that was my biggest fear – Being utterly exhausted, sleep deprived and depressed and having a mentally ill or out of control, non-sleeping, bizarrely energetic boy. And lo and behold, those very characteristics are pan of the behavioral phenotype that has been identified for the chromosome deletion: it was terrifying.
A sizable minority (12/30) of the study group discussed the stigma that attaches to disability in the US. They understand that the lack of economic support is only one part of a culture that claims acceptance but ultimately ostracizes people with visible disabilities. The financial lack of support was a critical factor for Urika: I should backtrack here. It wasn’t so much about the quality of life she could have – it was also about our immediate situation. Neither of us have living parents or immediate family that we’re close to. The relatives that we do have are nice on a superficial level, but not real helpful and we’re not very close. And we’re basically working schmoes – we have no savings. And I do know someone whose baby was diagnosed with cerebral palsy and seizures at 4 months old and they told the parents he probably wouldn’t live past his 12th birthday. He died at 25 and they went bankrupt twice. These are working people. And I said, we just can’t go through what they went through. We just don’t have the resources. It’s all about resources that we didn’t have. That poor woman who had that child 28yean ago didn ‘t have any choices, but I do and I think I have to put some foresight into this.
Six women spoke of experiencing the teasing most endure due to differences at some stage in life. They were not willing to give birth to children who are likely to be teased for much of their existence. They talked about feeling pain due to the awareness of difference and a sense of not belonging and did not want that for their child. Women want to protect themselves and their living and future children from the stigma, financial, and emotional demands of caring for a child with disabilities, despite feeling love toward the “baby” they have conceived in their hearts, minds and bodies.
The dilemma of the whole story
The events of testing, decision-making and termination are cloaked in secrecy. The various stigmas attached keep women silenced about their experience. Women long for support, yet fear telling “the whole story” about the circumstances of their loss for fear of negative judgment. Marilyn explains:
I do think that bearing the secret was an additional stress on me. No question about it, but telling them the truth would have, or so I imagine[d], be additional stress as well, just a different kind of stress.
They adjust the story to the level of support they believe the listener may be able to provide, carefully adjusting disclosure to perceived support. When support is granted (i.e., expressions of sympathy are extended) in cases where the woman did not tell “the whole story”, she feels the support is ill-gotten and is unable to utilize it effectively. Sarah talks about this clearly:
I think I only told the people I knew would support me. To have anyone condemn me would have hurt too badly. I felt fragile as glass. The people I worked with (except two dose friends) I simply told them “I lost the baby”. Then some people who I told we simply lost the baby due to a genetic condition commented on how brave we were to continue the pregnancy. This just added to the guilt… There were some people I wished I could share the whole story with, but in the end felt I just couldn’t risk my heart. Everyone I told was 100 percent supportive. I told all of the people closest to me. I wish I could tell everyone… Sometimes there is that guilt though of not telling the whole story.
Thus women are confronted with the dilemma of sharing the whole story and risking rejection or titrating the story and feeling any support they receive is ill-gotten.
Partners’ dilemmas of support
These dilemmas affect women’s partners as well. Although the study group was comprised of the women, they reported on their perceptions of their partner’s responses. When the partner is male (as were all partners in this study group) there is a mismatch between gender roles and expectations. Deirdre found this problematic during the diagnosis and decision-making phase when her husband kept telling her not to worry:
How bad was it? What kind of Down’s? Me being a teacher, I know the kind of life we’re talking. So he pretty much left it in my arms… The hardest part was, he didn’t really give me any feedback, nothing like what we should do. He wasn’t saying anything. And that really hurt me for a long time. That he didn ‘t say, “I agree with what you’re doing”. Of course, now that I look back at it, months after, I know what he was doing. If I would have said “we have to continue this pregnancy” and he’s thinking, “we can’t do this”, he knows what will happen. But at the time, I was very, very angry that he wouldn’t.
Male gender roles do not incorporate prenatal bonding, verbalization of emotion, and tolerance for tearful emotional expression in most situations. Although men experience these things, they may stifle their own emotional expression in order to be “strong” for their grieving partners. Women from the study group report this as a source of extreme stress within the relationship as they tend to interpret the lack of emotional expression as indicating a lack of attachment on the part of the partners to both themselves and the pregnancy they shared. Nanci describes how this extends to grieving:
About 3-4 weeks after Maddy’s burial, I really felt him not only pulling away from me emotionally, but also felt as though he was pushing me to “be okay”. I resented it. And I was terribly hurt and felt completely alone. I would come to him needing to talk and though I felt he would listen, he would also try to say things to make me feel better which I didn ‘t want to hear. I wanted someone to say, “Yes, you’re right. You should be sad. You should be angry. It’s Okay to feel this way”. And he really couldn’t do it. I think he believed that if he gave me permission to really go deep into my pain that I would never come out.
Partners must decide whether to share their own sense of attachment and grief and thereby violate gender roles, or follow the gender role prescription of minimal emotional expression and being “strong” so their wife would not “really go deep into [her] pain”, but risk their wife’s alienation and potential for not meeting their partner’s needs at a time of distress.
Women who made the decision to terminate a desired pregnancy after the discovery of a fetal anomaly experienced grief that mirrors that of spontaneous pregnancy loss. The responsibility for decision-making complicates and seems to intensify this grief after TFA. Chosen loss is a concept yet to be explored in bereavement studies. When a person experiences losses as a direct result of their own choice, such as TFA, clinical experience shows that they often feel they are not entitled to their grief . Yet, these chosen losses are often the most challenging in terms of ability to grieve with adequate supports and time. Many of these challenges are directly related to ambivalent societal messages about bonding, prenatal screening and diagnosis, abortion and disability. The societal ambivalence manifests itself in a lack of formal support resources.
The stigma of abortion and disability in the USA compounds the isolation, leading to a major challenge to elicit and receive effective support for one’s grief. Support is further compromised due to the titrated nature of the stories women tell about the circumstances of their loss. Women report feeling frightened of judgment and refrain from telling “the whole story”, leaving them without the benefit of ventilation and reconstruction that narrative therapies have shown to be so valuable . Further, they are unable to ask for and receive the empathy, validation and support that they desperately need. Frequently, few formal supports are available beyond a post-delivery or post-surgical medical exam. The finding that nearly all the women in this study report feelings of wanting to die should raise provider awareness of the need for these services to be available for women who have a TFA.
Women benefit from support where the whole story can be told, particularly in support groups designed for couples who have this experience. They benefit from a more nuanced understanding of the abortion debate. They benefit from health care providers who assure adequate formal and informal support resources and who allow them to process their feelings, expectations and dilemmas with an empathetic manner. Successful interventions are designed to help women consider the fact that the existence of the anomaly is the thing that causes the emotional pain. Pain would exist whether they terminate or whether they had a baby who then had to cope with medical and social challenges. Further, it is important to explore the contrast of this finding with women who give birth to children with anomalies.
Assistance in coping with the grief cannot be separated from an understanding of the way advances in technology affect the decision- making and grief process for these women and their families.
Dr. McCoyd would like to thank the Association of American University Women for an American Dissertation Fellowship award in 2002-2003 which helped to support this research. The comments of two anonymous reviewers are also appreciated.
Current knowledge on this subject
* Greater use of fetal screening and diagnostic testing leads to expanded use of termination of desired pregnancies.
* Women experience complicated grief and trauma in response to these losses, though studies of mental health sequelae are variously interpreted and primarily quantitative.
* Earlier gestational age, good social support and an anomaly that is incompatible with life all seem to make coping with this loss somewhat easier.
What this study adds
* Qualitative studies can explore the ongoing process of grieving and adjustment over time – this is one of the very few studies to do that.
* Discussion of the social support context is often mentioned, yet seldom the focus of the study as it was in this research. * The ambivalent societal messages in the USA strongly influence women’s emotional responses and their coping abilities, as the women in this study reveal.
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JUDITH L. M. MCCOYD
Rutgers University, The State University of New Jersey, School of Social Work, NJ, USA
(Received 27 December 2005; accepted 31 October 2006)
Correspondence: Judith McCoyd, 327 Cooper Street, RU-SSW, Camden, NJ 08102-1519. Tel: (856) 225-2657. E-mail: [email protected]
Copyright Taylor & Francis Ltd. Mar 2007
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