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If current trends continue, it may eventually become “unacceptable” for parents to continue a pregnancy knowing that their baby has Down syndrome. Recent US studies have indicated that when Down syndrome is diagnosed prenatally, 84% to 91% of those babies will be killed by abortion.1,2,3,4 This trend is not isolated to the United States. In England, a 2004 study showed that 94% of babies who were diagnosed prenatally with Down syndrome were subsequently aborted.5 When all Down syndrome babies are considered – those diagnosed prenatally as well as those only diagnosed with DS after birth – studies show that 26% to 37% of these tiny lives will be ended by abortion.6
An estimated 70% of all pregnant women in the United States will choose to have prenatal screening tests.* Certain screening results in combination can predict DS with up to 90% sensitivity,7 but they are not definitive. Women shown to be at high risk may then choose to have a cytogenetic test, either amniocentesis or chorionic villus sampling (CVS), to check for the extra chromosome that would indicate DS. As first trimester screening tests become increasingly reliable, more women are choosing CVS because it can be done in the 9th to 12th weeks of pregnancy, thus allowing an earlier abortion. It has been shown that the younger the unborn baby, the greater the likelihood that a woman will have an abortion for DS.2 It should also be noted that in up to 1% of the pregnancies tested by amniocentesis, the baby is lost. CVS is even more dangerous as over twice as many babies die and a few are born with handicaps.
When a woman finds out that her unborn baby has Down syndrome, what is she facing? In a 2004 study out of Harvard Medical School, researcher Brian Skotko found that women in this situation felt anxious and scared when learning of the diagnosis, and about half felt rushed or pressured into making a decision about continuing the pregnancy.8 Their feelings may have been partially influenced by the doctor’s approach. Most health care providers tend to assume that if a woman consents to prenatal screening or diagnosis, she is willing to discuss abortion as an option. Also, many doctors in these cases may see advantages in ending the pregnancy as soon as possible to avoid the medical risk to the woman of a late abortion. Combine this predisposition with the perceived “burden” of raising a child with Down syndrome, and many women could convince themselves that abortion is their most prudent “choice.”
To counteract this effect, it is also true that doctors presenting the prenatal diagnosis can positively influence the outcome if they provide balanced information about DS. The same Harvard study found that mothers who chose to continue their pregnancy after a prenatal diagnosis of Down syndrome did so for personal reasons such as conscience and religion, but also because they had gotten information about Down syndrome, either in printed materials or from talking to a parent of a child with DS. However, most of the mothers felt that their doctors did not explain DS adequately and in a balanced fashion. They suggested that doctors and genetic counselors should convey consistent, accurate and sensitive messages about life with a child with DS, and that doctors, nurses and hospitals should provide contacts with local DS support organizations.8
As helpful as many DS support organizations can be to parents of children with DS, some of the largest ones have abdicated any responsibility for reducing abortions of babies with birth defects. The March of Dimes, the National Down Syndrome Society, and the National Down Syndrome Congress all take a neutral stance on abortion, ostensibly because they don’t want to judge or to tell anyone what to do. However, a neutral stance on abortion is not a neutral policy. It implies that the killing of these innocents is in the best interests of society, and can therefore be justified. Instead, these organizations need to take a stand in defense of all babies with Down syndrome, born and unborn. They could have an unparalleled influence on the current situation by putting a positive face on these unborn babies, whose humanity and inherent value to society shine through at the moment of birth. There is no telling how many precious lives could be saved if they did.
* Maternal serum tests measure the levels of certain substances in the mother’s blood: alpha-fetoprotein (AFP), human chorionic gonadotropin (hCG), and estriol, and are combined with maternal age to calculate a risk factor for Down syndrome in a pregnancy. Another screening test, an ultrasound marker called nuchal translucency, measures the accumulation of fluids behind the neck of the fetus.
1 Forrester MB, Merz RD. 1999. Prenatal diagnosis and elective termination of Down syndrome in a racially mixed population in Hawaii, 1987-1996. Prenat Diagn 19(2):136-41.
2 Kramer RL, Jarve RK, Yaron Y, Johnson MP, Lampinen J, Kasperski SB, Evans MI. 1998. Determinants of parental decisions after the prenatal diagnosis of Down syndrome. Am J Med Genet 79:172-174.
3 Caruso TM, Westgate MN, Holmes LB. 1998. Impact of prenatal screening on the birth status of fetuses with Down syndrome at an urban hospital, 1972-1994. Genet Med 1(1): 22-8.
4 Wertz, DC. 1997. The Impact of Prenatal Diagnosis on Down Syndrome, Anencephaly and Spina Bifida. GeneSage, GeneLetter. Accessed at: www.genesage.com/professionals/geneletter/archives/theimpact.html
5 The National Down Syndrome Cytogenetic Register 2004 Annual Report. Accessed at: www.wolfson.qmul.ac.uk/ndscr
6 Siffel C, Adolfo C, Cragan J, & Alverson CJ. 2004. Prenatal Diagnosis, Pregnancy Terminations and Prevalence of Down Syndrome in Atlanta, Centers for Disease Control and Prevention, Atlanta, Georgia; Birth Defects Research (Part A) 70:565-571.
7 Grant SS. (September 30, 2000): Prenatal Genetic Screening. Online Journal of Issues in Nursing. Vol. 5, No. 3, Manuscript 3.
8 Skotko BG. 2004. Prenatally diagnosed Down syndrome: Mothers who continued their pregnancies evaluate their health care providers. Am J Obstet Gynecol 192, 670-7.