Intro
Recent headlines have drawn attention to the very high rates of abortion after a diagnosis of Down Syndrome, especially efforts in Iceland to "eradicate" Down Syndrome -- which doesn't have to do with curing Down Syndrome but with abortion unborn children who have or are suspected to have the condition.
Many critics have pointed out the eugenecist mindset behind such efforts:
The problem with testing for Down Syndrome isn’t the fact that you know your child has Trisomy 21 before birth. Testing is amoral. The problem with testing has always been in the presentation and exploitation by governments and individuals alike to eliminate those deemed “unfit for life” before the point at which it becomes legal murder for one to do so. In Iceland, abortion is legal up to 16 weeks, except in the case of an abnormal fetus. You can repeat that testing is totally optional and abortion is totally optional all you want.
The fact is that the Icelandic government and many others have codified the idea that Down Syndrome life is less valuable than non-Down Syndrome life. Such states have accepted the idea that some life is “life unworthy of life” or “Lebensunwertes Leben.” Instead of using their coercive power in pursuit of this perverse idea, they ensure that healthcare professionals nudge, persuade, even pressure parents toward that end. Doctors can paint the most dire picture of the life of their disabled child without offering resources or any evidence that their child might live a full and fulfilling life, and their expertise carries weight.
Culture, too, has already primed their minds to make the worst choice. “The desire to be perfect and healthy is anchored in people’s minds through public discourse. Because of that, many expectant parents have a conflicted conscience,” as doctor and historian Christiane Rothmaler told Deutsche Welle in a discussion of Nazi eugenics.If you are waiting for state coercion to trigger your concern about eugenics, you ignore the tragedy unfolding right now as institutions encourage individuals to eradicate the “unfit.”
In the following article, researchers from The DeVeber Institute for Bioethics and Social Research explore another aspect of abortion and prenatal testing, namely, the impact on parents and families.
The Impact of Abortion After Prenatal Testing
Elizabeth Ring Cassidy and Ian Gentles
In advanced industrial countries, prenatal testing in order to detect fetal abnormalities has become routine. The amount of genetic information that has become available has expanded enormously in the past few years. While there are a number of ways of carrying out these tests, for each of them there is a danger of inaccurate results, and for some of them there is the additional hazard of injury to the fetus.
In past decades little emphasis has been placed on the psychological outcome for women who abort a child owing to genetic disorders following prenatal diagnosis. But one significant change in recent years has been the growing amount of available genetic information about individual fetuses. This information increases the likelihood that a woman will have an for abortion, perhaps at a late stage in her pregnancy.
Parents Unprepared for Diagnosis
Pregnant women and their partners are often unprepared for the news that they are carrying a “defective” fetus. An abortion undergone in haste and under coercive pressure can have devastating consequences, not only for the parents, but for their other children. Is enough being done to inform women about the implications of prenatal testing, and to provide them with alternative choices to abortion when tests prove positive?
There often appears to be dissonance between the practitioner’s understanding of the purpose of prenatal diagnosis and the pregnant woman’s perception of the procedure. While the practitioner may view the diagnostic tests as a way of preventing the birth of a “defective” child, pregnant women seek them out for reassurance that their babies are well and healthy.[1] For many expectant couples, the link between prenatal testing and abortion, at least initially, does not exist.[2]
Even when birth defects and abortions are explicitly discussed, the pregnant woman and her partner often simply do not link this outcome to prenatal diagnosis.[3] This may be in part because genetic counselors do not make this link explicit to their clients.
In her study of the effects of prenatal diagnosis on the dynamics of pregnancy, Barbara Katz Rothman found that, while genetic counselors might presume that selective abortion would follow the detection of an anomaly, rarely did they offer any information about actual abortion procedures. Indeed, some did not even include a discussion of abortion in the first counseling session.[4] Furthermore, they do not provide information favorable to children with special needs.
Sequelae of Genetic Termination of Pregnancy
Despite the shock and grief they may experience upon hearing the news of a fetal anomaly, the pregnant woman and her partner are usually urged to to terminate quickly.[5] Behind this urgency is the physician’s desire to avoid complications of “late” terminations of pregnancy.
Because of the delays involved in testing, abortions may occur in the second and even third trimesters of pregnancy.
In health care settings, the issue of such late abortions has raised ethical and legal questions.[6] In one early study, most of the terminations occurred within 72 hours of the woman receiving the news of the abnormality.[7] This hardly allows enough time for the couple to become informed about parenting children born with that anomaly and thus consider carrying on with the pregnancy.
While couples may not be completely aware of the physical aspects of genetic abortions, they usually know even less about the accompanying and subsequent psychological and emotional distress of the procedure.[8] In interviews conducted by two research teams, all of the study subjects found the pregnancy termination to be a traumatic experience.[9]
Terminating a pregnancy because of a major fetal malformation is often a shattering experience, and time for adjustment may be prolonged.”[10] This is true for both “early” as well as “late” genetic abortions.[11] Indeed, there may be instances in which an early abortion may present more difficulties than a later abortion. One study subject reported this to be so because “there was no fetus to see and hold” after an early termination.[12] “It is possible that the ‘privacy’ of first trimester prenatal diagnosis and selective [genetic] abortion may actually increase the unresolved ‘disenfranchised’ grief since so few people know about the person’s loss.”[13]
Researchers offer various explanations for this phenomenon. In almost all cases, pregnancies terminated for genetic anomalies were pregnancies in which maternal attachment had begun,[14] even if woman may have hoped to avoid such attachment.[15] Many of the women choosing or urged to undergo prenatal diagnosis were older and, as some authors speculate, the pregnancy may have been seen to be one of a declining number of opportunities to have a child.[16]
Other researchers speculate that “perhaps the role of decision making and the responsibility associated with selective abortion explains [sic] the more serious depression following [the abortion].”[17] Whatever the reason, “prospective parents are rarely prepared . . . for the extent of the psychological trauma experienced after a selective [genetic] abortion.”[18]
The Intensity of Grief
The extent and intensity of grief can be a surprise to many couples.[19] Nearly half of the women in one study had symptoms of grief six months after the abortion and almost one third continued to grieve thirteen months after the termination.[20] “The loss of a fetus can cause intense grief reactions, often commensurate with those experienced over the loss of a spouse, parent, or a child.”[21]
Neither the method of termination nor the type of anomaly seems to have affected the intensity of grief, and women grieved abortions following both chronic villi sampling and amniocentesis.[22] With abortions after ultrasound and maternal serum alpha fetoprotein testing, there was “more confusion, numbness and subsequently more prolonged grief reactions. . . .” This suggests that, with these “relatively non-invasive procedures . . . less thought is usually given by the women to preparation for an abnormal finding.”[23]
Following genetic termination of pregnancy, women endure the normal but difficult symptoms of grief, such as psychosomatic disturbances and feelings of guilt and anger, as well as the symptoms characteristic of an abruptly ended pregnancy in which the fetus dies — distress upon seeing pregnant women or newborn babies, continuing to feel pregnant, and experiencing more pronounced stress around the due date and anniversaries.[24] Recovery can take a very long time[25] and, because of the nature of genetic abortions, the grief may be accompanied or complicated by other factors.
Feelings of guilt and shame are often experienced after a genetic abortion. In one study, this was the case for one-third of the subjects.[26] In another, researchers found that, more than a year after the abortion, 31 percent of the women who had terminated their pregnancies for fetal indications continued to feel guilt and anger.[27] A very common form of psychological disturbance following a genetic abortion is depression.[28] Taking into account some study subjects’ strong denial of feelings, “the actual incidence of depression following selective abortion may be as high as 92 percent among women and as high as 82 percent among the men studied.”[29]
In another study, researchers found that, six months after the abortion, almost half of the subjects suffered from depression and anxiety and that ten of 48 women were receiving psychiatric treatment.[30] The researchers concluded that it was not the case that women were simply relieved not to be giving birth to or raising a child with an anomaly.[31] “Women undergoing termination of a planned or wanted pregnancy after prenatal diagnosis constitute a high risk group, vulnerable to depression and social disruption.”[32]
Living Children
Abortion for genetic reasons can have a negative impact on living children. Although it is not often considered a factor in the initial decision-making process, the abortion of a sibling can have emotional consequences for children in a family. Children are affected by the anxiety of parents over the abortion and react to the absence of the baby (whose presence they will have been aware of from the third or fourth month of pregnancy). Even very young children react to their parents’ distress and may have difficulty understanding and coping with the outcome.[33]
In the presence of prenatal life, young children do not separate the concept of “fetus” from the concept of “baby.” The conceptual difference between the two is a medical and social construct of adults and is not easily understood by children whose approach to the world is concrete.
In one study, couples adopted one of three approaches in explaining the abortion to their children. The first was a partial explanation that avoided discussing the role of their own choice. The children who received such an explanation expressed sadness, disappointment, and guilt, and one child wrote an essay on the event as the worst thing that had ever happened to him.
Parents of very young children chose to give no explanation and yet observed behavioral changes such as motor regression in their children. Those parents who chose the third option — to give a complete explanation — did not find that it solved the problem. Rather, they reported marked and disturbing reactions.
One researcher reports that “abortion can produce a deep, subtle (and often permanent) fracture of the trusting relationship that once existed between a child and parent.”[34] A number of “post-abortion survivor syndromes” have been identified, showing that “there are terrible conflicts that arise from these situations, and these have an impact on the individual and society.”[35]
Public Opinion vs. Medical Opinion
At present, in the general population, there appears to be a gap between acceptance of testing for disorders and acceptance of abortion of the affected fetus. When a similar group of Canadian adolescents was presented with already completed prenatal test results, it was found that “females are consistently more opposed to abortion than are males and both sexes show a considerable opposition to abortion in absolute terms.”[36]
Other researchers note that “health professionals hold more positive attitudes towards termination of pregnancy for fetal abnormality than do lay groups.”[37] Under the present circumstances, this could lead to “stimulating a demand for services” rather than responding to a perceived need.
Prenatal diagnosis, already accepted as part of obstetrical care, is expanding to include many conditions, disorders, and personality traits. With these new opportunities for aborting affected pregnancies come issues about informed consent and possible social coercion to abort.
If women abort as a result of medical pressure then the decision will be conflicted and a violation of their personal autonomy. One researcher asks: “Does genetic testing of a fetus empower women or pose an unanticipated threat to autonomy? To address these issues there is a need to articulate a feminist perspective on genetic testing and possibly to legislate protection for women’s rights during prenatal care.”38
Furthermore, there is a negative presumption in the medical milieu regarding children with these conditions. There is an imbalance of information, with little provided that is favorable to children with special needs.
Conclusion
Prenatal testing is expanding rapidly, as ever more genetic markers are discovered and women are urged to undergo these tests. It seems that there can be enormous pressures applied to mothers to go through with terminations if an anomaly is found.[39]
Couples are not prepared for the negative emotions that frequently ensue. Nor are they usually informed about the help that is available for raising children with special needs. For an informed choice to be truly available pregnant women and their partners need to be told about the possible impact of abortion on them and their other children, and they also need to have information about the care of children with special needs.
~~~
Parts of this article were excerpted from the book “Women’s Health After Abortion: The Medical and Psychological Impact,” by Elizabeth Ring-Cassidy and Ian Gentles. Reprinted with permission. Chapters from the book are available online here.
Citations
1. Green JM. Obstetricians’ views on prenatal diagnosis and termination of pregnancy: 1980 compared with 1993. British Journal of Obstetrics and Gynaecology 1995 March;102(3):228-232, p. 231; and Mander R. Loss and Bereavement in Childbearing. Oxford: Blackwell Scientific Publications, 1994, p. 44.
2. Mander., op. cit., p. 44.
3. Jones OW, Penn NE, Shuchter S, Stafford CA, Richards T, Kernahan C, Gutierrez J, Cherkin P. Parental response to mid-trimester therapeutic abortion following amniocentesis. Prenatal Diagnosis 1984;4:249-256, p. 250.
4. Rothman Barbar Katz. The Tentative Pregnancy: How Amniocentesis Changes the Experience of Motherhood. Revised. New York: W.W. Norton and Company, 1993, pp. 36-47; and Kolker A, Burke BM. Grieving the wanted child: Ramifications of abortion after prenatal diagnosis of abnormality. Health Care for Women International 1993 November-December; 14(6):513-26, p. 515.
5. Rayburn WF, Laferla JJ. Mid-gestational abortion for medical or genetic indications. Clinics in Obstetrics and Gynaecology 1986:13-71-82, p. 72; Rothman, op. cit, p. 1194; and Blumberg BD, Golbus MS, Hanson KH. The psychological sequelae of abortion performed for a genetic indication. American Journal of Obstetrics and Gynecology 1975;122:799-808, p. 806.
6. Green, op. cit; and Hunfeld JAM, Wladimiroff JW, Passchier J, Venema-Van Uden MU, Frets, PG, Verhage F. Emotional reactions in women in late pregnancy (24 weeks or longer) following the ultrasound diagnosis of a severe or lethal fetal malformation. Prenatal Diagnosis 1993;13:603-612, p. 603.
7. Donnai P, Charles N, Harris R. Attitudes of patients after “genetic” termination of pregnancy. British Medical Journal 1981;282:621-622, p. 622.
8. Boss JA. First trimester prenatal diagnosis: Earlier is not necessarily better. Journal of Medical Ethics 1994;20:146-151, p. 147. and Kolker, op. cit.
9. White-Van Mourik MCA, Connor JM, Ferguson-Smith MA. The psychological sequelae of a second trimester termination of pregnancy for fetal abnormality over a two year period. Birth Defects: Original Articles Series 1992;28:61-74, p. 71; and Zeanah CH., Dailey JV, Rosenblatt MJ, Saller, DN Jr. Do women grieve after terminating pregnancies because of fetal abnormalities? A controlled investigation. Obstetrics & Gynecology 1993;82:270-275, p. 275.
10. Rayburn, op. cit.; and Blumberg, op. cit.
11. Kolker, op. cit.; Rothman, op. cit.; and Black RB. A 1 and 6 month follow-up of prenatal diagnosis patients who lost pregnancies. Prenatal Diagnosis 1989;9:795-804, p. 801.
12. Seller M, Barnes C, Ross S, Barby T, Cowmeadow P. Grief and mid-trimester fetal loss. Prenatal Diagnosis 1993;13:341-348, p. 344.
13. Boss, op. cit.
14. Lorenzen J, Holzgreve W. Helping parents to grieve after second trimester termination of pregnancy for fetopathic reasons. Fetal Diagnosis and Therapy 1995 May-June;10(3):147-56, p. 154.; Kolker, op. cit.; and Seller, op. cit.
15. Lorenzen, op. cit.
16. Kolker, op. cit; Iles S, Gath D. Psychiatric outcome of termination of pregnancy for foetal abnormality. Psychological Medicine 1993 May;232:407-13, p. 407.
17. Blumberg, op. cit.
18. Boss, op. cit.
19. Kolker, op. cit.
20. Iles, op. cit.
21. Seller, op., cit.; and Mander, op. cit.
22. Zeanah, op. cit.; and Kolker, op. cit.
23.White-Van Mourik, op. cit.
24. Iles, op. cit.; Seller, op. cit.
25. Kolker, op. cit.; White-Van Mourik, op. cit.
26. Jones, op. cit.; Iles, op. cit.
27. Iles, op. cit.
28. Donnai, op. cit; Blumberg, op. cit.
29. Blumberg, op. cit.
30. Lloyd J, Laurence KM. Sequelae and support after termination of pregnancy for fetal malformation. British Medical Journal 1985;290:907-909, p. 908.
31. Iles, op. cit.; Mander, op. cit.
32. Donnai, op. cit.
33. Furlong RM, Black RB. Pregnancy termination for genetic indications: the impact on families. Social Work in Health Care 1984, Fall;10(1):17-34.
34.Garton J. The cultural impact of abortion and its implications for a future society. In: Mannion M, editor. Post-Abortion Aftermath. Kansas City: Sheed and Ward, 1994: 8899; p. 91.
35. Ney P, Peeters A. Hope Alive: Post Abortion and Abuse Treatment. A Training Manual for Therapists. Victoria, B.C.: Pioneer Publishing, 1993; pp. 29-33.
36. Curtis M, Standing L. The decision to abort: No sex-role bias, and little enthusiasm. Social Behavior & Personality. 1992;20(4):237-242, p. 239.
37. Drake H, Reid M, Marteau T. Attitudes towards termination for fetal abnormality: comparisons in three European countries. Clinical Genetics 1996 March;49(3):134-40, p. 139.
38. Feitshans IL. Legislating to preserve women’s autonomy during pregnancy. Medical Law (South Africa) 1995;14(5-6):397-412, p. 397.
39. Mander, op. cit.
Learn More:
Elliot Institute Legislation
The Elliot Institute has called for legislation that would provide for legal liability for abortion businesses that fail to screen for coercion and other factors (including later abortion and abortion for negative fetal diagnosis) that are known to put women at risk for psychological problems after abortion. For more information on this legislation, go here.
Articles & Information
Study: Abortion for Fetal Anomalies Increases Risk of Mental Health Problems
Ways to Help Parents Who Receive a Difficult Prenatal Diagnosis
Prenatal Testing and Coerced Abortion
Psychiatric Disorders Linked to Abortion for Fetal Anomalies
Women Share Their Stories of Abortion After Prenatal Testing
My Sister Has Down Syndrome, Would Abortion Be Okay?
Resources and Help
5 Things Parents Need to Hear
Encouraging information for parents who have learned their child has Down Syndrome, before or after birth
Defiant Birth: Women Who Resist Medical Eugenics
Book with stories from women who resisted abortion after being pressured to due to the mother’s disability or a poor prenatal diagnosis
Be Not Afraid
An online outreach to parents who have received a poor or difficult prenatal diagnosis. Provides help parents as they seek as they seek to honor the life of their baby, no matter how frail or how brief.
Isaiah’s Promise
Offers support and information to families who have received a severe or fatal prenatal diagnosis. Includes links to other organizations with helpful information.
Anencephaly.net
Online resource with links to multiple resources, articles and information for families who have received a diagnosis of anencephaly.
Anencephaly.info
Offers personal stories, support and information for families who have received a diagnosis of anencephaly. Help for affected parents, caregivers and friends. (Site is available in multiple languages).
Prenatal Partners for Life
A group of concerned parents (most of whom have or had a special needs child), medical professionals, legal professionals and clergy whose aim is to support, inform and encourage expectant or new parents. They offer support by connecting parents facing an adverse diagnosis with other parents who have had the same diagnosis. They have many resources such as adoption agencies with clients waiting to adopt and love a special needs child should a parent feel they could not care for them.
Morning Light Ministry/Hope in Turmoil Book
Morning Light Ministry offers free support to parents who are carrying their baby with a difficult prenatal diagnosis to term. They offer support by telephone and email, prayer support and assistance in creating a birth plan for your child. They also offer a book, Hope in Turmoil: A Guide for Decision Making After Receiving a Difficult Prenatal Diagnosis Regarding Your Baby (free download or order a print version).
Pregnancy Help and Resources
Center Against Forced Abortions
Help & Healing After Abortion
Help After Abortion Worldwide
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