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Blackwell Science, Ltd
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)
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 imagery3–6. 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 woman’s 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 woman’s 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
singleton or twin pregnancies approach the scan with some anxiety regarding whether everything is all right. ‘The baby becomes more real … Once you see the scan.16. Women may choose not to enter the relationship until they know that ‘everything is going to be all right.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. Not finding fetal anomalies or other problems represents reassurance for them that they are on track and have a normal pregnancy.20 found that ultrasound examination appeared at first as a method to visualize the future child.’ In routine pregnancies. FETAL ANOMALIES FOUND Women enter this situation with the same expectations and hopes with which they enter Situation A. his little fingers and toes. 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.14. It is magical.15. Detraux et al. or lack thereof. thus. as a couple.13. You can see so much detail it is amazing. scores for measures of anxiety. As McFadyen et al. but you have this real image of a little baby. their decision may be swayed in a matter of moments. 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. For example. Sparling et al. Because there are few therapeutic options for chromosomal anomalies or severe anatomical malformations. with no malformation11. at least for wanted pregnancies. following an ultrasound scan or other testing). Various feelings such as anxiety. and loneliness are generally found in such mothers20. some women are not told beforehand of the first scan’s potential to detect fetal anomalies. 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. experiencing sonography encourages confrontation with the reality of the pregnancy. It’s no longer your imagination at work. Upon informing a couple of the diagnosis of a fetal abnormality. 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. in the short amount of time while the pregnancy clock ticks. SITUATION B: ROUTINE PREGNANCY. and confront the anxiety-producing reality of fetal cardiopathy. Making this decision has the potential to cause more severe long-term psychological sequelae than a perinatal loss might give1. has the power to set parents’ minds at ease. depression and hostility declined. For those who choose to undergo multifetal reduction.18 noted that as parents received more definitive information. 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. and for whom an abnormal diagnosis is made in one or more of the fetuses. routine.e. somatic symptoms and hostility significantly decreased after ultrasound examination. When confronted by a ‘normal’ ultrasound. Rothman12 for example. they too must make a rapid decision to continue or terminate the pregnancy. perhaps because of an abnormal screen or simply their age. Situation D represents multifetal pregnancies in which an anomaly is discovered. so awe inspiring to see. then. hoping that it is. many couples elect termination of planned and wanted pregnancies. Such a diagnosis reinforces for parents the transformation from ‘being pregnant’ to ‘having a baby’3. The examination was then considered as ‘having the power’ to reveal the abnormality. very different scenarios are likely with ultrasound. women with low-risk. 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. oh everything. depression. discusses pregnancy as a physical and social relationship that may be entered into tentatively. or whether they were inclined to develop an attachment in any case.’ A positive diagnosis. Many pregnant women wish to undertake the ultrasound examination to ensure that the fetus is alive and healthy. In this first situation. women go into the scan with some modest anxiety regarding whether everything is all right. prostration. his eyes.19 found that feelings of anxiety. 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. Whether prospective mothers have been waiting to develop an attachment to the fetus until after they felt that the pregnancy was going well (i. Britt et al. depression. Michelacci et al. For patients in a lowrisk routine pregnancy with an abnormal diagnosis. When women have been put in the position of questioning whether everything is going to be all right. Puddifoot and Johnson17 provide the following example of a quotation from a couple: 2 Ultrasound in Obstetrics and Gynecology . and such decreases took place each time the patients underwent the procedure. As Leon10 explains. Often there is not sufficient time to digest and absorb the shock of the news before undergoing the termination itself. a conclusion that has considerable support in the literature. that all changes. Confirmation of a ‘normal’ pregnancy is a positive diagnosis with considerable emotional impact5.’ In this situation. there is a commonality among patients who find themselves in three of the four situations described above. In a group of 11 mothers who had a child with cardiopathy diagnosed before birth.1 show. such a process may have only benign consequences. 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. Although these situations may vary greatly in a couple’s response to the diagnosis of a fetal anomaly. 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 . Many studies have shown that the detection of an anomaly creates emotional disturbance for the mother and her partner.
Elective abortion based on a woman’s wish not to bear and parent the child commonly has few psychological consequences10. while the wife looked only at the ceiling. Britt et al. for example. when an abnormality is found that can possibly be treated in utero. The specific form of the question may have come in part from the fact that during the consultation with the physician. In some cases this may play out in a very controlled fashion.’ In some situations. we believe. There were no apparent reactions to not finding anything unusual on the part of either the husband or the wife during the initial ultrasound.’ 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. It is important. for example.”’ The confrontation of three or more babies in this situation creates. the use of ultrasound can confirm whether treatment was successful. upward spike in anxiety when it becomes clear that multiple embryos are being carried. the following case illustrates how the use of ultrasound can not only detect a fetal abnormality and be used in the treatment. ‘[She] said a silent prayer before lying on the exam table. anxiety. but may also reassure the patient that the fetus is again healthy and viable. by suppressing or minimizing mourning the loss] was made especially difficult by all the sonograms the women underwent. in most cases. I went in and hadn’t had a sonogram in a long time. the links are more direct. Right away she asked to see the screen as the sonographer took measurements saying. 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. was quite interested in the size and measurements of the embryos during the pre-MFPR ultrasound scan. quite different from that for more routine pregnancies. This is an emotional roller coaster ride. Such observations are compatible with McKinney and Leary’s9 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. but as the wife was getting into operating-room gowns. McKinney and Leary9 speak of the challenges of such pregnancies as follows: ‘This challenge [to avoid becoming attached to the terminated fetuses. 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. Typically. and future children that one might have from the burdens of genetic disease and poor quality of life. She explained that she was originally referred by two doctors who did not think the baby would make it. long-lasting grief reactions and often report feelings of grief and shame. the reactions are more complex. however. while his wife was getting dressed in gowns. since he didn’t see any anomalies with any of the embryos he’ll just pick eeny. Even before their pregnancies became physically apparent. Imputing these qualities to the physician’s decisions therefore cannot ease the father’s burden of decision. One horn of the dilemma is framed by the extent of commitment to the wanted and intended pregnancy. such women have gone through fertility therapy. At 10 weeks you can see hands and heads and things moving around. So. when an abnormality is found and may not be treated.’ We believe the ‘grief and shame’ should be understood as deriving from the moral dilemma within which women in such situations find themselves. “I just want to see her chest. albeit understandable. and uncertainty as they struggle with making a decision and begin to deal with its aftermath21. the need for several ultrasound examinations bombarded women with visual proof that they were carrying babies: “It was horrible. a different mind-set regarding the finding of fetal anomalies. 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. She was returning for a follow-up visit two weeks after the fetus had 2 mm of fluid removed from around the heart. there was discussion regarding how the selection of which embryos to reduce would be made and relative size was mentioned. in order to have a family. This same parent. parents must make the difficult decision to continue or terminate the pregnancy. In other cases. And suddenly you see three babies.” 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. watching the screen and asking questions about size. meeny. Women in this complex situation typically approach their 10th week of pregnancy with considerable anxiety and have already had several sonographic experiences. However. with a large drop in anxiety when the pregnancy is confirmed and a sharp. said: Ultrasound in Obstetrics and Gynecology 3 . The husband of one couple. a difficult process at best. the husband said to the researcher/escort in attendance: ‘So. 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. miney mo?’ Chance is blind and unpredictable. family. however.22–25. For example. The other horn is framed most closely by protection of self.Editorial often becomes crisis intervention to help the couple cope with their acute distress. SITUATION C: MULTIFETAL PREGNANCY.
“Yes. She then went to change into gowns and the husband said to the researcher/escort: ‘It’s almost like God is telling us to keep three of the embryos.’ The wife re-entered as he was saying this and said. crying softly.” As the procedure began. and they all measure about the same. A prior ultrasound had shown that one embryo was smaller. As soon as she heard that one of the embryos did not have a heartbeat.’ This is very similar to the reaction of a patient in another couple. One way that this plays out is reflected in the following couple’s reaction. Damaged goods captures in the parent’s 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. it’s that one. the search for damaged goods was led by the husband. Mrs Y presented with four embryos. that makes life a lot easier. Mr Carter remarked. “I’m really having trouble here.’ A more general way of referring to this. the reduction procedure. who indicated to the researcher/escort: ‘Hearing that they were the same size makes this [the procedure and justifying it] harder.” When the sonographer was measuring the nuchal folds Mr [X] asked what she [the sonographer] was looking for.’ Unlike most couples who go through the Wayne State University clinic. but it could be a sign of an anomaly. They were swayed (in their words) by ‘the statistics [regarding the decreased medical risk of reducing to two]. Not finding something wrong made it harder for these couples to cope with the situation. and that’s the one we’re going to reduce. right?” The sonographer answered.’ Something ‘damaged’ had been found (a smaller embryo). he declared that one of the embryos was definitely smaller than the other two. this couple were openly ambivalent about the procedure. ‘I wonder if we should just keep three now?’ The couple ultimately decided to reduce to two. During initial ultrasound Mr [X] said to sonographer. What separates these situations is what occurred next: 4 Ultrasound in Obstetrics and Gynecology . Mrs Z and her husband presented with what they thought were six embryos. the couple decided to go ahead with the procedure. thank God!” The physician went on to say.Editorial ‘I guess I was sort of hoping that one of them was waning a little bit.” Mrs [X] replied. Had they started with more than three embryos. FETAL ANOMALIES FOUND The fourth situation to be considered overlaps considerably with the third. not some chance process. “Oh. ‘When the physician entered and looked at the embryos.” At that point. The following case has similar features: ‘[They] are here for ultrasound. the following case. “Well. one of the embryos had no heartbeat. “Do you see three heartbeats? Are they all about the same size?” The sonographer answered yes to both questions. Mr Carter had his head in his hands. low-risk pregnancy. “You only see three. Britt et al. for themselves. that makes life a lot easier. their decision regarding how to go forward might have been different. I’m hoping there will be a sign from the universe. Mr [X] asked what that meant and [the sonographer] said. but ambivalent about doing the procedure that day. hoping for the diagnosis of an anomaly to help justify. though a prior ultrasound had raised a SITUATION D: MULTIFETAL PREGNANCY. playing God. He says. There was reason to thank God because the decision to reduce the pregnancy had become morally justifiable to this father. Consider. The sonographer mentioned that one of the embryos had a nuchal fold measurement of 2 while the others measured 1.’ 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.” While crying softly he asked the sonographer. Natural selection is God’s will. though it was the husband who did most of the talking: ‘[He] had head in hands during initial ultrasound. and sighing sighs of relief. 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. Knowing two were smaller [their last ultrasound suggested two embryos were smaller than the others] seemed like natural selection [our emphasis]. 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]’. The couple were open in the prior consultation with the physician about wanting to keep three rather than reduce to two. and during the preprocedure ultrasound. or was smaller in size. Here the moral dilemma is framed on one horn by the level of commitment to having children. 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. as the following case shows. Nature’s taking care of one of them and it’s a sign to us. for example. Instead. there’s a higher probability that if something is wrong with any of them.’ Yet this outcome does not always occur. but it was the wife who exclaimed ‘Well. and on the other by the prospect of having to reduce some embryos in order to increase the viability of the others. the wife looked at the screen. “Because that one’s smaller.’ With this case. “It might not mean anything. these couples are searching for any indication of weakness.
. and the detection of a fetal anomaly may be met with relief rather than despair. First trimester ultrasonographic diagnosis of fetal structural abnormalities in a low risk population. “What?! What?! I’ve been praying for this! I said if there were only three I was going to keep three. Int J Gynecol Obstet 1995. Britt et al. though still tangible. Eik-Nes SH. Puddifoot JE. Wyatt G. Their prayers had been answered in their minds. Infant Mental Health 1995. Courtois A. Presented at British Psychological Conference. Beedle J. 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. Braithwaite JM. “There might be one empty sac. We argue that the ambivalence stems from the fact that in the multifetal-reduction situation. however. 72: 902–7 19 Michelacci L. Relief. 105: 53–7 5 Campbell S. Major B. 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