In recent decades, there has been a stark decline in the number of children born with Down Syndrome due to increased abortion rates. One of the major factors contributing to this phenomenon is advances in prenatal testing that allow pregnant women to determine whether or not their fetus has Down Syndrome with decreased risk of miscarriage. This article’s objective is not to discuss the ethics of abortion nor condemn women who utilize their right to do so, but solely to analyze the factors which contribute to this trend and the potential effects in the long term.
The phrase “we don’t care” contains a surprising capacity for love.
These were the words the Guzman parents had repeated time and time again to the obstetrician, a normally no-nonsense and frank woman who, while sharing their story with the other volunteers and me, was almost reduced to tears. It was the couple’s first child after years of trying to conceive and nearly a decade of immigration complications, and they were set in their decision to carry him to term.
“We don’t care that our son has a 90% chance of having Down Syndrome. We don’t care about the potential health complications. We don’t care that our child will be different. We realize that our role as parents will become vastly complicated. We. Don’t. Care. We will love him no matter what.”
Families like the Guzmans, however, are becoming rarer than ever. In the United Kingdom, out of the 66% of pregnant women who choose to undergo prenatal testing, 90% of those who discover their child has Down Syndrome terminate the pregnancy. In Iceland, where a much larger percentage of expectant mothers undergo the test, that number is near 100%. It is important to note here once more that the purpose of this article is not to debate the morality of abortion nor castigate women who take advantage of their legal right to terminate their pregnancies. Instead, the objective is to explore the factors which contribute to a woman’s decision to abort a fetus with Down Syndrome and the potential long-term impact of such a drastic trend.
Outside of prenatal testing (whose impact will be discussed later), there are widespread misconceptions which could contribute to the prevalence of termination. One such myth is that children with Down syndrome die at a young age, as in the cases of children with other genetic disorders such as Tay-Sachs and Duchenne Muscular Dystrophy. Although individuals with Down Syndrome are more likely to be affected by leukemia, thyroid disorders, and congenital heart defects, advances in medical treatment have increased the average life expectancy to sixty years. However, it isn’t merely survival rates which have improved. In contradiction to the idea that individuals with Down’s Syndrome remain perpetual children, many grow up to lead highly adult lives—marrying, attending secondary school and university, holding jobs, and living independently or with minimal assistance. Take the case of Karen Gaffney, a two-time Paralympic gold medalist who has swum nine miles across Lake Tahoe, obtained an associate’s degree, and currently serves as president of the Down Syndrome advocacy nonprofit the Karen Gaffney Foundation. While individuals like her are indeed exceptional, her life successfully quashes the misconception that people affected by Down Syndrome can never truly become adults.
The pervasiveness of misconstrued beliefs such as these has potential to influence the high termination rate in that parents, wanting the best for their child, may believe aborting is the preferable option to a life abbreviated by unpreventable medical conditions. It is also possible that they feel overwhelmed with the prospect of being the primary caregivers for someone whom they believe will need intensive lifelong support or guilty about carrying a child to term whom they do not feel properly equipped or ready to raise. Once again, the decision to abort a pregnancy is an incredibly personal one—therefore it is essential that prospective parents whose fetuses test positive for Down Syndrome are aware of these misconceptions so that they have the tools to make that decision based solely on their personal situation rather than myths perpetuated by society.
The changing nature of prenatal screening itself also has a significant impact on the high termination rate. Until fairly recently, the only options available for definitively diagnosing Down Syndrome prior to the actual birth were amniocentesis (in which is a needle is inserted through the mother’s abdomen in order to obtain a small sample of amniotic fluid from the uterus) and chorionic villus sampling (during which a tissue sample is taken via a similar method from the placenta). Due to the invasive nature of these procedures, there is a slight risk of miscarriage—between 0.5 and 1%—which discouraged some women from being tested. Now however with the introduction of NIPT (non-invasive prenatal testing) which merely requires a blood sample from the mother, it is possible to screen the fetus for Down syndrome without the risk of miscarriage. This undoubtedly accounts at least in part for the high termination rate simply because, without the risk of harming the fetus, more women are likely to be tested. And because test results determine the decision to abort, the more prevalent non-invasive testing becomes, the higher the termination rates will be as more women become aware of Down syndrome while pregnant.
The trend of the declining number of Downs individuals is a complex one for a myriad of reasons. Having worked with an organization involving special needs children for five years, I have seen firsthand that individuals with Down’s syndrome require a tremendous amount of care. Down Syndrome grants the children I worked with a special capacity for love, affection, and joy—but it would be false to say that this condition does not also pose enormous complications in regards to their long-term development and well-being. I believe that the world has much to gain from individuals with Down Syndrome—but it is impossible for anyone who has not personally confronted this choice to say that either path—that of termination or of going through with the pregnancy—is the correct one.