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.
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
Although prenatal testing did not exist in the form it does today, the desire to identify physical and intellectual fetal abnormalities
contributed to the eventual legalization of abortion state by state and on a federal level.
In more recent years, with the advent of ultrasound technology, amniocentesis, and prenatal screening tests, more and more women have been able to identify
fetuses with atypical characteristics in utero. Ultrasound technology emerged in the 1960s, though it was not used in a routine manner until the 1980s.
Blood tests that offered a probability of a fetus having Down syndrome or other conditions emerged in the late 1980s, and again, the link between these
tests and abortion continued. In the past, definitive diagnosis of chromosomal conditions could only come via chorionic villa sampling (CVS) or
amniocentesis, both procedures that pose some risk to the life of the fetus. As a result, doctors and women always considered the risk of miscarriage or
harm to the fetus, and many women who didn't want the option of abortion declined the tests.