“It’s a girl!”
I received these words with tears of joy when our third child, Marilee, was born. We could have known her sex months earlier, of course, but we decided to wait. And yet, as I wrote in a recent Her.meneutics post, other cultures are far less willing to receive girls with joy. In both India and China, many people receive the prenatal information that they are having a girl as cause to terminate a pregnancy.
Prenatal information always comes within the context of a larger cultural narrative. We express our dismay over the “gendercide” halfway across the globe, yet prenatal testing in the United States also comes within a cultural context. Here, prenatal testing focuses upon identifying “fetal abnormalities.” Information about such abnormalities occasionally help a baby survive through surgical intervention in utero or due to additional medical support at birth. Information can also help parents receive a child with physical or cognitive delays. But the same information is often used as the reason for having an abortion, particularly when tests identify the presence of an extra 21st chromosome, more commonly known as Down syndrome.
In recent months, researchers have found a way to conclusively identify Down syndrome using a blood test in the ninth week of pregnancy. Although the test remains prohibitively expensive, it should be widely available in the next year. Current screening tests begin as early as 11 or 12 weeks, but the only definitive way to identify a fetus with Down syndrome is via chorionic villus sampling (CVS) in the 11th week, or amniocentesis around the 18th week of pregnancy. Both of these procedures carry with them a risk of miscarriage. The new test is noninvasive, providing close-to-definitive information without risk to mother or child. It also occurs before the time many women have told others the news of pregnancy.
Researchers hail these advances as good news for pregnant women. Others who want to protect babies with Down syndrome worry that these advances will lead to a tremendous increase in abortions for women with a prenatal diagnosis of Down syndrome. (It is true that 85-90% of women with prenatal diagnoses of Down syndrome currently abort. Only 2-5% of women, however, have amnios, it was recently reported. As a result, most babies with Down syndrome are born to women who did not have a prenatal diagnosis.)
The headlines surrounding this discovery underline the cultural assumptions that a baby with a prenatal diagnosis of Down syndrome will be aborted. Time asked, for instance, “Can a New Blood Test Make Babies With Down Syndrome Disappear?” The title alone assumes that as the test becomes widespread, we will see fewer and fewer babies with Down syndrome. Similarly, ABC News reports, “New Down Syndrome Test Could Cut Healthy Baby Deaths.” Here the headline indicates that because these tests do not carry with them a risk of miscarriage, they offer a way to save the lives of “healthy” babies while continuing to identify “sick” babies with Down syndrome.
Our culture tells two stories when it comes to Down syndrome: one of suffering and eradication, and another of hope and promise. A recent article from The Wall Street Journal demonstrates the presence of hope and inclusion for individuals with Down syndrome even as it reports on these early tests. The article lists facts compiled from the National Down Syndrome Society. It not only mentions that “people with Down syndrome have an increased risk for heart defects, respiratory problems and other ailments,” but also that “many of these conditions are now treatable” and “the life expectancy for people with Down syndrome has risen to age 60 today, up from just 25 in 1983.” Similarly, congressional legislation now mandates that doctors give up-to-date and factual information about Down syndrome. Ten thousand booklets created by Lettercase.org were distributed this year to U.S. doctors to offer positive and accurate information when providing a prenatal diagnosis.
For many, a prenatal diagnosis of Down syndrome in America is akin to a prenatal diagnosis of female in China: cause for concern and even ending the pregnancy. And yet human-interest stories, congressional legislation, inclusive educational environments, and medical advances that enhance quality of life offer a second cultural narrative, one echoed by the hundreds of thousands of families that include an individual with Down syndrome. Their narrative contains some hardship and suffering—as do most real stories of real people—but it also includes love, joy, and promise.
This new prenatal test poses a threat to babies with Down syndrome only if the cultural narrative assumes that babies with Down syndrome are better off dead. If, instead, we see these babies as fellow human beings in need of care and inclusion, the prenatal information becomes akin to the information that a baby has one X and one Y chromosome.
It is unlikely that anyone will be able to stop this new prenatal test from being performed on most pregnant women. Even so, Christians can help place the information within a larger story: the story about an unexpected baby who was a source of great joy and who would endure both suffering and triumph at the end of his short life. Despite the uncertainty, the social stigma, and the fear of what might be, Mary received her child as a gift from God. When Jesus was only an infant, Mary also received Simeon’s prophecy that her son would be a source of blessing and of sorrow. He gave her the sobering words, “A sword will pierce your own soul too” (Luke 2:35).
Christians can tell the story of Down syndrome in light of the story of Jesus, with gratitude that Mary received her frightening prenatal diagnosis with humility and joy.
