Down Syndrome and the Purpose of Prenatal Testing

One night, not long after we learned of our daughter’s Down syndrome diagnosis, my wife and I were lying in bed when she pointed to her pregnant belly and said, “You know, we’ve been talking about this child as if she were imaginary, but she’s here in the bed with us now.” It was a powerful moment for me. I believe I became prolife right then and there.

News that a simple, non-invasive blood test that can detect Down syndrome at nine weeks of pregnancy may soon be available has revived questions about the purpose of prenatal testing. What is gained by pushing these diagnoses earlier and earlier into a woman’s pregnancy? Won’t it lead to a greater number of abortions? Is Down syndrome like small pox, a condition we should be trying to eliminate?

The expansion of prenatal testing in recent years has coincided with an explosion in the percentage of Down syndrome pregnancies that end in abortion. Some no doubt view the ultimate eradication of Down syndrome as a good thing. In my experience, a person’s opinion of Down syndrome is a good predictor of their opinion about abortion, and vice versa.

But I view the drive to eradicate Down syndrome through abortion as a threat to my daughter’s health and well-being. As the prevalence of Down syndrome declines, so too will research funding and social support. No one wants their child to be an endangered species. No one wants their kid to be the last of the Mohicans.

When it comes to prenatal testing for Down syndrome, the fact is we are now only tinkering at the margins. There is no putting a genie like that back in the bottle. Over time, these tests will be refined and improved. We shouldn’t be too surprised if one day a test is developed that can diagnose almost any genetic condition mere moments after conception.

Some estimate that upward of 90 percent of Down syndrome pregnancies are aborted. I strongly suspect that the new, non-invasive test for Down syndrome will cause abortion rates to spike even higher than they are now. Why wouldn’t it? At nine weeks, most women aren’t even visibly pregnant yet.

In a recent post on the Washington Post ’s “On Parenting” blog, Allison Hassett Wohl, whose son has Down syndrome, notes that good information is in tragically short supply for parents facing this diagnosis. Hasset Wohl learned of her son’s condition only after he was born: “What remains etched in my mind from those early days is overwhelming, paralyzing fear of the unknown, fear of my own prejudices, fear of how society might treat him. I am grateful that, in facing that fear, I was able to hold my beautiful, enchanting baby. I knew that I loved my son with such enormous force that somehow we would find a way through what seemed at the time to be a long, dark tunnel.”

This is, in many ways, the clearest explanation of the “problem” of prenatal testing that you will ever find. Prenatal means, literally, before birth. When analyzing the results of a prenatal test, it can be all too easy to convince yourself that there really is no baby. It sometimes seems like a bad dream from which you might wake. With no fat face to fall in love with, no little chubby bubby to coo over, there is only fear, and the long, dark tunnel. This puts the unborn child at a severe disadvantage.

I am now a committed Catholic, but those who know me might be surprised to know that we went ahead with our daughter’s pregnancy not out of fidelity to the Church’s teaching on abortion, or some other seemingly inflexible commitment, but because at the time it seemed vaguely like the right thing to do. Only after speaking with a mother of a young girl with Down syndrome did we begin to understand that our world wasn’t ending. This mother didn’t sugar coat things”far from it”but she did give us a critical bit of information that wasn’t obvious either from our discussions with doctors or the research we had done on the Internet.

You can do this, she said. You can raise this child. You will be okay.

I am not against prenatal testing for Down syndrome and other genetic conditions. Quite the contrary: I think more information is better than less information. Knowing our daughter’s condition allowed us to prepare for her arrival and provide for her unique needs. But more importantly, knowing that we could do it, that we weren’t the first or the only people in the world to walk this path was vitally important. It prepared me to accept the realization that the baby was already there with us in the bed.

What I am against is a prenatal testing regime that biases women in favor of abortion, either by failing to provide useful information or by actively providing misinformation. The latter scenario is unfortunately common. A Down syndrome diagnosis is typically accompanied by a frightening litany of potential health defects, social challenges, and unbelievably low average IQs. There is rarely anyone present who has actually met someone with Down syndrome. There is rarely someone there to say, “You can do this. You can raise this child. You will be okay.”

You need not share my views about abortion to share my concerns about prenatal testing for Down syndrome. You need only agree that expectant parents deserve more”and better”information than they currently receive.

Matthew Hennessey works as an editor in New York City. His writings about family and faith have appeared in The Irish Echo, Catholic New York, and Fairfield County Catholic . He blogs at www.ninetydeuce.com.

RESOURCES

Matthew Hennessey, Down Syndrome and the Texas Sonogram Law

Charles J. Chaput, Conscience, Courage, and Children With Down Syndrome

Become a fan of First Things on Facebook , subscribe to First Things via RSS , and follow First Things on Twitter .