Between 70 and 85 percent of women in the U.S. confronted with a prenatal diagnosis of Down syndrome choose abortion -- but that number used to be higher.
In 2005, when I was pregnant with my first child, I was offered a "quad screen." A simple blood test that would identify provide a series of statistical probabilities that my baby had Down syndrome, other (less common) genetic diseases, or a neural tube defect.
I didn't think much of the test. It seemed like an easy way to learn about the life growing within me, and I assumed the results would allow me to cross a few worries off the list. I certainly didn't think about the intersection of historical, ethical, and economic concerns that had led to that moment.
But then the results came, and my doctor called to say that I had a 1 in 316 chance of having a child with Down syndrome -- higher than the average 28-year-old "age-related risk" of 1 in 1000. Since my husband and I did not want the option of abortion, my doctor counseled us against an amniocentesis, which would have offered a definitive diagnosis, but would have also carried a slight risk that I would miscarry (1 in 200 to 400, depending upon the study). Instead, she suggested a Level Two Ultrasound.
The ultrasound technician measured our child's tibia and fibula and nuchal fold, and did a prolonged search for other markers of trisomy 21, and then she pronounced: "This child may be many things. But it does not have Down syndrome." I promptly returned to a state of giddy excitement for the life ahead.
The same liberal social forces that led to the legalization of abortion forty years ago have also led to social progress for many individuals with disabilities, including those with Down syndrome.
In retrospect I wonder why I spent so much time convincing myself that the test results would be negative. I spent no time thinking about why the prospect of a child with Down syndrome caused such tightness in my chest, such a need to convince myself that it couldn't be true of my child or within my family. Why was I so frightened of Down syndrome? Was it the way the tests were presented, the aura of somber intensity that came along with the uncertain results? Was it fear on behalf of my baby? Or fear for myself? Did it disrupt a hazy vision of the life I had always expected our family to lead? Was it the fact that a diagnosis of Down syndrome automatically led to a conversation about abortion, that Down syndrome automatically led to a choice that wouldn't have otherwise been on the table? I didn't ask myself any of those questions back then. I just wanted a healthy baby.
Our daughter Penny was born a few months later, and two hours after birth a pediatrician and neonatologist offered the unexpected news that she had Down syndrome after all. At the same time, she was healthy. But back then, "healthy" and "Down syndrome" didn't seem to belong in the same sentence.
In the eight years since I was pregnant with Penny, the prenatal testing landscape has changed significantly, but the questions women must address in choosing their course through prenatal tests haven't. Medical professionals have wanted to offer women the option of abortion for fetuses with "deformities" or "disabilities" for nearly a century, and women have wanted those options in light of the medical and social difficulties that can arise with a child with a disability.
As early as the 1930s, doctors who were arguing for legalized abortion used the prospect of aborting fetuses with "deformities" as a rationale for abortion in the case of medical necessity. As Daniel Williams, an associate professor of history at the University of West Georgia explained to me, "The belief that women should have the right to terminate pregnancies in which they suspected fetal deformities predated ultrasounds and prenatal testing. Those medical technologies certainly facilitated abortions, but the relationship between suspected fetal deformity and abortion preceded those tests by several decades ... concerns about fetal deformity were driving the debate over abortion legalization even in the early 1960s, several years before ultrasounds were introduced."