Ultrasound Obstet Gynecol 2002; 20: 1 5

Blackwell Science, Ltd

Editorial
Devastation and relief: conflicting meanings of detected fetal anomalies

Editorial Britt et al.

D. W. BRITT*, S. T. RISINGER, M. K. MANS and M. I. EVANS*

*Department of Obstetrics and Gynecology and Department of Human Genetics, MCP Hahnemann, Philadephia, PA and Department of Sociology, Wayne State University, Detroit, MI, USA (e-mail: Mevans@Drexel.edu)

INTRODUCTION
Routine prenatal obstetric ultrasound is now common practice, often with photographs and even videotapes of the fetus being given to the expectant parents. Ultrasound scanning has been an integral part of antenatal care in industrialized countries for some time, but until recently detection of fetal abnormalities by this method has been possible only in the second trimester1. Advances in ultrasound technology have made it possible to detect a variety of fetal anomalies through non-invasive means, including chromosomal and structural anomalies. It is believed that sonographic examinations, in expert hands in a non-selected population, will detect around 50% of the major fetal anomalies, with almost no false-positive diagnoses2. In tandem with these advances have come increased clarity and definition of fetal limbs, features, movements, and heart beat. Ultrasound scanning is also known to have psychological effects due to its vivid imagery36. According to Lydon and Dunkel-Schetter7, ultrasound presents an opportunity for the parents to see, attend to, and be reminded of, specific features of their commitment to the pregnancy and may reassure women during this time of uncertainty by making their commitment more tangible and concrete. As might be expected, the effects of ultrasound scanning differ substantially depending on whether fetal abnormalities are diagnosed. For women in whom fetal anomalies are diagnosed, the scan becomes a trigger for an increasingly stressful set of procedures that may culminate in the termination of the pregnancy or loss of the baby8. The apparently predictable emotional impact of ultrasound for such pregnancies is misleading, however, and can be very harmful if one generalizes to all sonographic situations. In determining how women react to ultrasound, we might use the same starting point as that used by McKinney and Leary9 when discussing reactions to the multifetal-reduction procedure: Each womans unique response to the event [emphasis ours] was shaped by multiple factors, including her personality, social relationships, previous life experiences, and attitude toward medical interventions.

While each womans reaction to ultrasound images may be unique, we believe that powerful contextual forces shape the meaning of the experience for the couple, and, in particular, the meaning of discovering or not discovering fetal anomalies. In this editorial we examine the ultrasound scans just prior to multifetal-pregnancy-reduction (MFPR) procedures as they have been conducted at the Wayne State Reproductive Genetics Clinic, comparing them with the typical experience of women undergoing scans in more routine pregnancies. A simple typology allows us to consider more deeply the implications of different combinations of pregnancy routineness and whether or not a fetal anomaly is found. We distinguish along one dimension between routine pregnancies (defined as wanted pregnancies in which singleton or twin embryos are being carried and there is no intention to reduce the number of embryos) and MFPR pregnancies (defined as multiplefetus pregnancies where selective reduction has been chosen as a means to increase the viability of the remaining embryos). The second dimension of this typology consists of finding or not finding evidence of fetal anomalies during the ultrasound. Thus, there are four contrasting sonographic situations being explored that we expect to have different implications for the reactions of patients and their spouses to the finding of fetal anomalies via ultrasound. Situation A represents routine pregnancies in which no anomalies are diagnosed. In this case, sonography may serve to reinforce the normalcy of the pregnancy. In Situation B, a diagnosed anomaly puts the routine pregnancy at great risk and may generate anxiety, fear, and moral dilemmas for the woman carrying the fetus and her partner. For women with a multifetal pregnancy in which no anomalies are found (Situation C), parents, ironically, may

EDITORIAL

Editorial often be left with increased anxiety and in an even greater moral bind than if an anomaly had been found in one or more fetuses. Situation D represents multifetal pregnancies in which an anomaly is discovered. This discovery may often be experienced as relief and it is the only situation in which the diagnosis of an anomaly may help to reduce the stringency of the moral dilemma that the patient and her partner may be experiencing. Although these situations may vary greatly in a couples response to the diagnosis of a fetal anomaly, or lack thereof, there is a commonality among patients who find themselves in three of the four situations described above. This common thread is the limited time frame in which all couples are forced to make a decision regarding the future of the pregnancy upon learning of its special characteristics. For example, a couple who discovers they are carrying multiple embryos often has a maximum of 2 weeks in which to make the decision as to whether to reduce. For those who choose to undergo multifetal reduction, and for whom an abnormal diagnosis is made in one or more of the fetuses, their decision may be swayed in a matter of moments. For patients in a lowrisk routine pregnancy with an abnormal diagnosis, they too must make a rapid decision to continue or terminate the pregnancy. As Leon10 explains, the profoundly difficult decision that each partner faces of whether to terminate the pregnancy is further complicated by the need to come to some mutual agreement, as a couple, in the short amount of time while the pregnancy clock ticks. Often there is not sufficient time to digest and absorb the shock of the news before undergoing the termination itself.

Britt et al. The baby becomes more real Once you see the scan, that all changes. Its no longer your imagination at work, but you have this real image of a little baby. You can see so much detail it is amazing, his little fingers and toes, his eyes, oh everything. It is magical, so awe inspiring to see. In this situation, then, women go into the scan with some modest anxiety regarding whether everything is all right. Not finding fetal anomalies or other problems represents reassurance for them that they are on track and have a normal pregnancy. The following example is illustrative of a couple who had had a previous miscarriage and were therefore mildly anxious regarding how well everything was going. When confronted by a normal ultrasound, they were pleasantly surprised by the visual images: You could see all the arms and legs and everything looked great it was just the neatest experience. A positive diagnosis, thus, has the power to set parents minds at ease, a conclusion that has considerable support in the literature. Sparling et al.18 noted that as parents received more definitive information, scores for measures of anxiety, depression and hostility declined. Michelacci et al.19 found that feelings of anxiety, depression, somatic symptoms and hostility significantly decreased after ultrasound examination, and such decreases took place each time the patients underwent the procedure.

SITUATION B: ROUTINE PREGNANCY, FETAL ANOMALIES FOUND

Women enter this situation with the same expectations and hopes with which they enter Situation A. When women have been put in the position of questioning whether everything is going to be all right, perhaps because of an abnormal screen or simply their age, very different scenarios are likely with ultrasound. Many studies have shown that the detection of an anomaly creates emotional disturbance for the mother and her partner. Various feelings such as anxiety, prostration, depression, and loneliness are generally found in such mothers20. In a group of 11 mothers who had a child with cardiopathy diagnosed before birth, Detraux et al.20 found that ultrasound examination appeared at first as a method to visualize the future child, and confront the anxiety-producing reality of fetal cardiopathy. The examination was then considered as having the power to reveal the abnormality. As McFadyen et al.1 show, some women are not told beforehand of the first scans potential to detect fetal anomalies. Many women whose pregnancies may have naturally ended in spontaneous perinatal loss are thus being faced with having to make an active decision about whether to continue with their pregnancy. Because there are few therapeutic options for chromosomal anomalies or severe anatomical malformations, many couples elect termination of planned and wanted pregnancies. Making this decision has the potential to cause more severe long-term psychological sequelae than a perinatal loss might give1. Upon informing a couple of the diagnosis of a fetal abnormality, genetic counseling

S I T U A T I O N A : R O U T I N E PR E G N A N C Y , N O FE T A L A N O M AL I E S
The impact of ultrasound is contingent on the nature of the process in which it is involved and on the findings of the scan. In this first situation, women with low-risk, routine, singleton or twin pregnancies approach the scan with some anxiety regarding whether everything is all right, hoping that it is. Many pregnant women wish to undertake the ultrasound examination to ensure that the fetus is alive and healthy, with no malformation11. Rothman12 for example, discusses pregnancy as a physical and social relationship that may be entered into tentatively. Women may choose not to enter the relationship until they know that everything is going to be all right. In routine pregnancies, such a process may have only benign consequences, at least for wanted pregnancies. Whether prospective mothers have been waiting to develop an attachment to the fetus until after they felt that the pregnancy was going well (i.e. following an ultrasound scan or other testing), or whether they were inclined to develop an attachment in any case, experiencing sonography encourages confrontation with the reality of the pregnancy. Confirmation of a normal pregnancy is a positive diagnosis with considerable emotional impact5,13,14. Such a diagnosis reinforces for parents the transformation from being pregnant to having a baby3,15,16. Puddifoot and Johnson17 provide the following example of a quotation from a couple:

Ultrasound in Obstetrics and Gynecology

Editorial often becomes crisis intervention to help the couple cope with their acute distress, anxiety, and uncertainty as they struggle with making a decision and begin to deal with its aftermath21. Such observations are compatible with McKinney and Learys9 interpretation of the emotional impact of terminating a wanted pregnancy: Women who terminate a pregnancy because of genetic or developmental defects in the fetus usually have severe, long-lasting grief reactions and often report feelings of grief and shame. We believe the grief and shame should be understood as deriving from the moral dilemma within which women in such situations find themselves. One horn of the dilemma is framed by the extent of commitment to the wanted and intended pregnancy. The other horn is framed most closely by protection of self, family, and future children that one might have from the burdens of genetic disease and poor quality of life. It is important, however, to draw a distinction between women who undergo an elective abortion of an unintended and unwanted pregnancy and those who terminate a wanted pregnancy due to fetal anomaly. Elective abortion based on a womans wish not to bear and parent the child commonly has few psychological consequences10,2225. McKinney and Leary9 point out that: women who terminate an unwanted pregnancy rarely develop depressive disorder and most often characterize their emotional reaction as relief. In some situations, however, the reactions are more complex, albeit understandable. So, for example, when an abnormality is found that can possibly be treated in utero, the use of ultrasound can confirm whether treatment was successful. For example, the following case illustrates how the use of ultrasound can not only detect a fetal abnormality and be used in the treatment, but may also reassure the patient that the fetus is again healthy and viable. [She] said a silent prayer before lying on the exam table. She explained that she was originally referred by two doctors who did not think the baby would make it. She was returning for a follow-up visit two weeks after the fetus had 2 mm of fluid removed from around the heart. Right away she asked to see the screen as the sonographer took measurements saying, I just want to see her chest. As soon as she saw the fetus and realized that there was no additional fluid around her heart she was greatly relieved and was able to relax throughout the remainder of the ultrasound scan. This case demonstrates the power of sonographic images in enabling a mother to visualize that her fetus has been successfully treated and has a greater potential to survive. However, when an abnormality is found and may not be treated, parents must make the difficult decision to continue or terminate the pregnancy.

Britt et al.

SITUATION C: MULTIFETAL PREGNANCY, NO FETAL ANOMALIES

The situation in which a woman is carrying multiple embryos and MFPR has been chosen as a means of increasing the viability of some of the embryos is, in most cases, quite different from that for more routine pregnancies. Typically, such women have gone through fertility therapy, a difficult process at best, in order to have a family. This is an emotional roller coaster ride, with a large drop in anxiety when the pregnancy is confirmed and a sharp, upward spike in anxiety when it becomes clear that multiple embryos are being carried. Women in this complex situation typically approach their 10th week of pregnancy with considerable anxiety and have already had several sonographic experiences. McKinney and Leary9 speak of the challenges of such pregnancies as follows: This challenge [to avoid becoming attached to the terminated fetuses, by suppressing or minimizing mourning the loss] was made especially difficult by all the sonograms the women underwent. Even before their pregnancies became physically apparent, the need for several ultrasound examinations bombarded women with visual proof that they were carrying babies: It was horrible. I went in and hadnt had a sonogram in a long time. At 10 weeks you can see hands and heads and things moving around. And suddenly you see three babies. The confrontation of three or more babies in this situation creates, we believe, a different mind-set regarding the finding of fetal anomalies. In some cases this may play out in a very controlled fashion. The husband of one couple, for example, was quite interested in the size and measurements of the embryos during the pre-MFPR ultrasound scan, watching the screen and asking questions about size, while the wife looked only at the ceiling. There were no apparent reactions to not finding anything unusual on the part of either the husband or the wife during the initial ultrasound, but as the wife was getting into operating-room gowns, the husband said to the researcher/escort in attendance: So, since he didnt see any anomalies with any of the embryos hell just pick eeny, meeny, miney mo? Chance is blind and unpredictable. Imputing these qualities to the physicians decisions therefore cannot ease the fathers burden of decision. In other cases, the links are more direct. One father said: Were there still just three? Were they all about the same size? Here is a direct expression of interest in numbers and whether they are all equally viable. The specific form of the question may have come in part from the fact that during the consultation with the physician, there was discussion regarding how the selection of which embryos to reduce would be made and relative size was mentioned. This same parent, while his wife was getting dressed in gowns, said:

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Editorial I guess I was sort of hoping that one of them was waning a little bit, or was smaller in size. This is very similar to the reaction of a patient in another couple, who indicated to the researcher/escort: Hearing that they were the same size makes this [the procedure and justifying it] harder. Knowing two were smaller [their last ultrasound suggested two embryos were smaller than the others] seemed like natural selection [our emphasis]. A more general way of referring to this, and what the patient and her partner were looking for is reflected in the comments of another father after finding nothing amiss: We were clearly looking for damaged goods [emphasis ours]. Damaged goods captures in the parents own words what they were hoping to find: something wrong that would have made it easier to justify the selective termination of one or more of the embryos. Natural selection is Gods will, not some chance process. Not finding something wrong made it harder for these couples to cope with the situation. These examples clearly demonstrate that finding a fetal anomaly in a multiple pregnancy prior to a multifetal-reduction procedure would not create the grief and anguish found in those couples in a routine, low-risk pregnancy. Instead, these couples are searching for any indication of weakness, hoping for the diagnosis of an anomaly to help justify, for themselves, the reduction procedure.

Britt et al. When the physician entered and looked at the embryos, he declared that one of the embryos was definitely smaller than the other two. Mr Carter remarked, Oh, thank God! The physician went on to say, Because that ones smaller, theres a higher probability that if something is wrong with any of them, its that one, and thats the one were going to reduce. As the procedure began, Mr Carter had his head in his hands, crying softly, and sighing sighs of relief. Something damaged had been found (a smaller embryo). There was reason to thank God because the decision to reduce the pregnancy had become morally justifiable to this father. The following case has similar features: [They] are here for ultrasound, but ambivalent about doing the procedure that day. During initial ultrasound Mr [X] said to sonographer, You only see three, right? The sonographer answered, Yes, and they all measure about the same. When the sonographer was measuring the nuchal folds Mr [X] asked what she [the sonographer] was looking for. The sonographer mentioned that one of the embryos had a nuchal fold measurement of 2 while the others measured 1. Mr [X] asked what that meant and [the sonographer] said, It might not mean anything, but it could be a sign of an anomaly. Mrs [X] replied, Well, that makes life a lot easier. At that point, the couple decided to go ahead with the procedure. With this case, the search for damaged goods was led by the husband, but it was the wife who exclaimed Well, that makes life a lot easier. Unlike most couples who go through the Wayne State University clinic, this couple were openly ambivalent about the procedure. Had they started with more than three embryos, their decision regarding how to go forward might have been different. Consider, for example, the following case. Mrs Y presented with four embryos. The couple were open in the prior consultation with the physician about wanting to keep three rather than reduce to two. A prior ultrasound had shown that one embryo was smaller, and during the preprocedure ultrasound, one of the embryos had no heartbeat. As soon as she heard that one of the embryos did not have a heartbeat, the wife looked at the screen. She then went to change into gowns and the husband said to the researcher/escort: Its almost like God is telling us to keep three of the embryos. Natures taking care of one of them and its a sign to us. The wife re-entered as he was saying this and said, I wonder if we should just keep three now? The couple ultimately decided to reduce to two. They were swayed (in their words) by the statistics [regarding the decreased medical risk of reducing to two]. Yet this outcome does not always occur, as the following case shows. Mrs Z and her husband presented with what they thought were six embryos, though a prior ultrasound had raised a

SITUATION D: MULTIFETAL PREGNANCY, FETAL ANOMALIES FOUND

The fourth situation to be considered overlaps considerably with the third. Multifetal-pregnancy-reduction patients and their partners enter the situation hoping to find something that will make it easier for them to resolve the moral dilemma in which they find themselves. Here the moral dilemma is framed on one horn by the level of commitment to having children, and on the other by the prospect of having to reduce some embryos in order to increase the viability of the others. One way that this plays out is reflected in the following couples reaction, though it was the husband who did most of the talking: [He] had head in hands during initial ultrasound. He says, Im really having trouble here, playing God. Im hoping there will be a sign from the universe. While crying softly he asked the sonographer, Do you see three heartbeats? Are they all about the same size? The sonographer answered yes to both questions. The same search for damaged goods and the same hope for a sign from the universe occurred as with the couples discussed in the last section. What separates these situations is what occurred next:

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Editorial question as to whether there were actually six embryos or only five. The couple decided during the medical consultation to reduce from six to two because of the greatly enhanced viability for the surviving embryos. The preprocedure ultrasound, however, revealed a different and unexpected situation: During the ultrasound examination, the sonographer indicated, There might be one empty sac, and there may only be three living. Mrs [Z] exclaimed, What?! What?! Ive been praying for this! I said if there were only three I was going to keep three. The fact that there were only three remaining embryos was confirmed by the physician after further examination. The couple decided to not reduce to two. Their prayers had been answered in their minds. The situation for multifetal-reduction patients is quite different from that for patients whose pregnancies are more routine. The initial experience of the realistic images is often received with great ambivalence by the former, and the detection of a fetal anomaly may be met with relief rather than despair. We argue that the ambivalence stems from the fact that in the multifetal-reduction situation, image realism may vivify the moral dilemma that the patients have been confronting. Relief, then, reflects the easing of this dilemma by making the process of reduction more feasible from an ethical point of view. McFadyen et al.1 counseled that one should not generalize knowledge learned about the meaning of terminations for those undergoing such procedures for psychosocial reasons and those undergoing terminations for reasons of fetal anomalies. We make an analogous argument here: the meaning of what is happening during ultrasound for routine pregnancies is very different from the meaning of ultrasound and findings for MFPR patients. The key to understanding these differences lies in the implications for the moral dilemma couples face. Finding an anomaly or the threat of an anomaly (damaged goods) in a routine pregnancy thrusts the couple into a moral dilemma. Not finding such damaged goods in a triplet pregnancy thrusts the parents into a more intense moral dilemma because of the relatively small, though still tangible, differences in birth outcomes between twins and triplets. Finding damaged goods in triplets gets the couple out of this dilemma. What happens with multiples above three depends upon how many embryos are considered normal and how many embryos are chosen by the couple as their medical option.

Britt et al.
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