Tangled Diagnoses

Prenatal Testing, Women, and Risk

The University of Chicago Press

Contents

The Liminal Fetus

PND and the Aborted Fetus

PND has become a risk management technology thanks to its use in determining impaired fetuses for the possibility of selective abortion. Selective abortion became and remains the primary intervention of genetic and fetal medicine. The latter development was facilitated by the liminal status of the fetus, a material entity endowed with a fluid and unstable status. It was also facilitated by the long history of nonselective abortion, used as a method to control female fertility. Abortion opponents firmly believe that life begins with conception, and that the status of the embryo/fetus is equivalent to that of the newborn child. People who do not unconditionally oppose abortion have more fluid and indeterminate perceptions of the unborn. The same can be said of women who undergo an abortion; moreover, these perceptions mirror their attitude toward their pregnancy and may change with time. Contrasting images of PND reflect such perceptions.

The fetus, as the anthropologist Lynn Morgan notes, has become an icon. Images of fetuses are everywhere: in textbooks and popular books, in health publications, in the media, and on billboards. These omnipresent images are the result of the impressive labor involved in making many other things invisible:

The embryo visualizations portrayed in a contemporary coffee-table book about gestational development is to be a remarkable political achievement predicated, in part, on keeping hidden the unsavory details of anatomical technique that transform dead specimens into icons of life.

Unretouched photographs of dead fetuses and images of their dissections, Morgan argues, are nearly universally considered revolting. She remembers seeing by chance the photograph of a severed fetal head: the image haunted her for a long time. It is nevertheless important to remember how fetuses really look:

It is undoubtedly easier and more pleasant for feminist scholars to study beautiful artistic renditions of fetal development or those produced through sanitizing reproductive imaging such as ultrasound, than it is to contemplate the gory techniques and practices described above. Yet by focusing so exclusively on the visual practices through which embryos and fetuses are materialized, feminists risk colluding in the cultural practices that produce and perpetuate such beautified fetal images.

The invisibility of the "real-life" fetus is inseparable from the invisibility of products of abortion. Scholars who study abortion seldom investigate the material aspects of this procedure. It is difficult to discuss the harsh physiological aspects of termination of pregnancy for fetal malformation, especially in the second and third trimesters of pregnancy. The invisibility of material aspects of abortion contributes to the stigma associated with this procedure. Women who decide to terminate a pregnancy for a fetal anomaly are caught in the contradictions between the expectation that women love their "baby" from the moment they learn they are pregnant, the belief that it is better not to give birth to a severely impaired child, and the difficulty of the procedure itself. Those who terminated a pregnancy following a PND of a fetal anomaly have reported intense feelings of grief and despair, which sometimes began up to a few weeks after the abortion, and which refused to go away, despite their health care providers' earlier reassurance that everything would be all right. The intensity and length of the grief following their supposedly rational decision frequently caught these women unawares.

Women who decided to terminate a pregnancy for a fetal indication may be harshly judged for that choice by opponents of abortion, while pro-choice activists who rigidly adhere to the view that a fetus is not a baby may fail to empathize with their very real grief. As a woman who aborted following a positive prenatal diagnosis explains, "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 life does begin and when we proclaim that our babies were alive and are our children. That makes it messy."

In the early days of abortion for fetal indications, the confusion and difficulty of this situation were already acknowledged by the physicians involved in the diagnosis of fetal disorders. Experts who counseled pregnant women saw themselves as directly responsible for the consequences of the diagnoses they had made. The British geneticist Bernadette Modell, one of the pioneers of PND for thalassemia (a severe hereditary blood disorder), remembers:

When the news got about, people started getting on planes in Cyprus, Italy and Greece to come for the service. We were under no illusion whatsoever that this was a service that was needed. But the experience was awful because we were only seeing patients at 25 per cent risk, which meant that we had 25 per cent affected fetuses, and 25 per cent of those women terminated that pregnancy, and they came at 18 weeks and they terminated at 20 weeks. As part of our clinical responsibility, we accompanied them; sat with them through the termination; showed them the baby and discussed the baby with them at the end. ... The experience of genetics for these women at that time was with techniques for prenatal diagnosis which were at the absolute borderline of acceptability.

The sense of responsibility was also felt by genetic counselors. In the early days of PND, many counselors were involved with the women's health movement and had a strong commitment to women's reproductive rights. They, too, felt the consequences of their interventions. June Peters, a US genetic counselor who started practicing in the early 1970s, recalls:

You couldn't do amniocentesis until 16 weeks, we didn't have results to disclose until 18, maybe 19 or 20 weeks. It was late. If the baby had to be delivered, the mother was admitted to the hospital and labor was induced. So I'd go sit with the moms and wait, and wait, and wait for hours and sometimes days. And they'd talk about their mixed feelings as the pregnancy was ending about how they really wanted this baby ... and it was tragic for them to have to terminate. Then I was there when the baby was delivered. Most of the fetuses were still-born. They were the size of your hand; we would wrap them up in miniature blankets or towels and bring them to the parents and help them say goodbye. And afterwards, we would go to the autopsy.

From the 1980s onward, the geneticists' and genetic counselors' task became dissociated from the material aspects of termination of pregnancy and from the contentious issue of handling the products of such a termination. Yet today the fate of the aborted fetuses remains a very difficult topic. Discussions about PND tend to steer away from the minefield of the practical modalities of abortion and from the fate of the fetal bodies outside the womb. Researchers who study PND usually focus on the decision to terminate a pregnancy, and stop short of asking what happened next to the woman and to the fetal remains.

Choosing — or Not — How to End a Pregnancy

In some cases, the termination of pregnancy for fetal indications, especially genetic anomalies, takes place at the end of the first trimester. In other cases, it occurs during the third trimester, because some fetal anomalies, such as malformations of the brain, are visible only late in pregnancy. Yet most abortions for a fetal indication are conducted during the second trimester (thirteen to twenty-seven weeks). In France, abortion for a fetal indication is performed in a maternity ward by the same physicians and midwives who attend a regular childbirth. The organization of medical labor, the spatial arrangement in the hospital, and the legal and administrative decisions blur the boundaries between a natural miscarriage, fetal death in the womb, and a termination of pregnancy following a positive PND. The second- or third-trimester termination of pregnancy is always a medical interruption: induction of expulsion of the fetus by drugs, then a birth-like process. Only those performed during the first trimester of pregnancy, 10.3% of all the abortions for fetal indications in France, are surgical abortions by aspiration.

Information leaflets distributed to French women undergoing an interruption of pregnancy explain that past the first trimester, the only alternative to a medical termination is a C-section, described as a bad choice because it weakens the uterus and may compromise the woman's reproductive future. These leaflets also explain that while some women scheduled for this procedure are initially shocked to learn that they will be going through labor, this is by far the better solution for them: "Parents have taught us, that, far from being traumatic, a well-accompanied birth process helps them to cope with this difficult event." Many French midwives are convinced that this is indeed the case. A normal childbirth is a physiologically extreme event, but its intensity is attenuated by an expected happy ending: the presence of a baby. The unavoidable physiological violence of an abortion for a fetal malformation does not have such a silver lining; nevertheless, midwives believe that the process of actively giving birth facilitates the grieving process. A minority among them also think that women who elect to terminate the pregnancy should bear the physical consequences of their choice.

The explanation given to French women that when a woman is more than fourteen weeks' pregnant her only choices are natural birth or a C-section is, to put it mildly, inaccurate. When an interruption of pregnancy takes place before twenty-four weeks, it is also possible to propose a surgical procedure: dilation and evacuation (D&E), performed under general anesthesia. In D&E, the fetus is dismembered before the elimination. There is no fetal body and no dilemmas about its management. For some women, this is an important advantage: they are spared the experience of "birthing death." For other women, this is an aggravating element: they want to be able to see and touch the fetus and perform mourning rites.

D&E was developed in the United States as an attempt to improve second-trimester abortions. The first method employed by physicians to induce second-trimester abortions was the injection of saline into the amniotic sac, a slow and painful process. It was later replaced by the use of prostaglandins, hormones promoting the expulsion of the fetus. Variants of this method continue to be employed today, using more effective products: mifepristone (RU486), misoprostol, or a combination of both medications. Paralleling the development of medically induced abortions, US surgeons in the 1970s refined the D&E technique. They described this method as an important improvement over the medical induction of abortion, because it causes less discomfort for the patient, is much faster, and yields a more certain result. More than 90% of second-trimester terminations of pregnancy in the United States continue to be surgical, although increasing limitations on the provision of abortion may seriously restrict women's access to this method and to second-trimester abortions in general. D&E is the most frequently employed method of second-trimester terminations worldwide, although in some European countries such as France, Finland, and Sweden, practically all the second-trimester abortions are medical, while in others such as the United Kingdom, it is used much less frequently than a medical termination.

Comparative studies indicate that in the second trimester, D&E may be seen as a good choice because, among other reasons, this intervention produces lower rates of post-abortion complications than a medical abortion. In addition, it is experienced by many women as a less painful and less traumatic procedure. Attempts to conduct randomized trials of the two abortion methods in the United States (where D&E is widely available) failed, because the majority of women preferred a D&E and refused to be randomized to the medical abortion branch. All the women interviewed wanted to be able to choose their abortion method, and those able to decide how they would abort reported satisfaction with the method they had chosen.

French women are not given such a choice, and it is reasonable to assume that only some of them know that such a choice exists. They are obliged to confront the expelled fetus and to decide how they should deal with it. French specialists claim that D&E presents a greater health risk to the woman. They also argue that D&E deprives the woman/couple of the possibility of seeing and holding the fetus and "properly" mourning the pregnancy loss. Another disadvantage of D&E, they say, is that this method destroys the fetus's body, a serious obstacle to an investigation of the causes of fetal malformation.

Nonetheless, the main reason for the unavailability of D&E in France and other countries may be the higher cost of this procedure, the need to train physicians and nurses to perform it, and the emotional difficulty for health professionals to carry it out. The statistician Sarah Lewit, a leading US expert on contraception and abortion, explained in 1982 that with the D&E procedure, the psychological burden was lifted from the patient and shifted to the physician, "who henceforth must rely on a strong sense of social conscience which focused on the health and desires of the women." In countries that reject the option of D&E for second-trimester abortions, physicians may be unwilling to shoulder this burden.

Extreme Cases: Late-Term Abortions and Nonviable Fetuses

If a fetal malformation is diagnosed after twenty-four weeks, the only choice for a woman who wishes to terminate the pregnancy is to undergo a medical termination. Such a late abortion is, as a rule, accompanied by feticide — an active killing of the fetus by injection of a lethal product before the induction of its expulsion. Most health professionals consider feticide as an indispensable element of an abortion after the viability limit. They find the alternative — birth of a living, breathing, and occasionally crying child destined to die — insupportable. Feticide, an especially traumatic experience, is rarely discussed in the context of induced abortion. Health professionals are reluctant to discuss it, while women who never heard about this procedure until they were expected to undergo it wonder whether the questionable morality of this act is the main reason for the quasi impossibility of discussing their experience. The Israeli sociologist Ronit Leichtentritt, one of the few social scientists who studied feticide, reports that women she interviewed vividly remembered the moment of fetal demise:

It was the worst moment in the feticide procedure — the experience of your baby dying inside you. — Sara

It took forever until he finally managed to inject that stuff into her. Then he needed to inject some more. And again some more. He kept on saying she is moving — it's like he was surprised she wasn't cooperating. — Tami

This is the worst part, when they [pause] when they inject [pause] they gave me Valium by injection at that point because I was in a terrible shape. I couldn't stop shaking, my whole body was shaking. — Hadas

I saw the last breaths he took. I saw the change, from being alive to [crying]. I saw the indications of his last breaths. — Ruth

You feel that these are his last movements, they're slower. ... It's horrible. It haunts you later, the sensation of a body changing from something alive and kicking to something dead. ... I could feel him dying slowly, resisting death, his last movements. — Noa

Prognostic uncertainty may aggravate the women's distress: as one of the women who underwent feticide explained, "Maybe I took his life by mistake. Maybe I did the most horrible thing and maybe not."

The violence of a late-term abortion coupled for some women with an unwillingness to feel responsible for the death of a well-formed child may explain why women who learn late in pregnancy that the fetus has a lethal malformation sometimes elect a natural birth and the demise of their child. As one woman put it, "She was alive and kicking. Termination was not an option to me. It was not the right thing to do it, morally." The Israeli anthropologist Noga Weiner describes the case of a woman who had one living child with a genetic disease. Her second child, born severely impaired, died in the hospital's intensive care unit after the child's physicians decided to withdraw care. In her next pregnancy, this woman underwent PND, found out that the fetus was affected, and elected to terminate the pregnancy. In her fourth pregnancy, she refused PND, partly because her physicians implicitly reassured her that they would again withdraw intensive care if the newborn child was severely disabled. This woman had found the process of separation from a live child less traumatic than a late-term abortion. She was haunted by her recollection of the aborted fetus looking healthy, whole, and intact. By contrast, she was able to see the struggle and the suffering of her newborn child and was willing to let him go.