Politics & Policy

The Medical Pros Are Wrong on Down Syndrome

(Image: Dreamstime)
A positive test for Down syndrome should not be an automatic reason to abort the baby.

October is Down Syndrome Awareness Month. As the parent of a child with Down syndrome, I’m on something of a mission to spread awareness. Unfortunately, some in the medical community are on a different mission. They would like to eradicate Down syndrome. Of course, no one puts it that way. They say their goal is to provide information so that women can make choices.

The proof, however, is in the pudding. A stunningly large percentage of the time, women who are told they are carrying a baby with Down syndrome choose what is euphemistically called “termination.” For this reason, spreading awareness of Down syndrome requires talking about abortion. This makes some parents of children with Down syndrome uncomfortable. Abortion is as gruesome a reality as it is divisive a topic.

Many prominent writers and advocates cling to the idea that they can be both pro-choice and pro–Down syndrome. They don’t want to address the invisible genocide of our children because it forces them to make common cause with pro-lifers like me. I don’t envy their predicament. To say that life with Down syndrome has value is to flirt with the dangerous notion that all life has value. Convincing yourself otherwise must be exhausting.  

Instead, these writers and advocates want to spread awareness by talking only about social acceptance, job opportunities, and educational inclusion for people with Down syndrome. I don’t discount the importance of these things. But it’s morally incoherent to argue that a just society must bend over backward to integrate, accept, and educate a child with Down syndrome, while at the same time suggesting that it’s fine to abort a baby because it has Down syndrome.

For me, it’s not possible to celebrate our children without also acknowledging that their lives, and the lives of those like them, are under threat. Because of the accuracy of a new generation of non-invasive prenatal tests, pregnant women who are carrying a baby with Down syndrome get the news much earlier than they used to. The tests can be given at nine or ten weeks, before most women have told anyone about the baby and, perhaps, before it’s even visible that they’re pregnant. Naturally, this makes it easier to obtain — and, for some, easier to justify — an abortion. 

Requiring no more than a finger-prick of blood, the new tests are 98 percent accurate. Soon, they will be available in every hospital, doctor’s office, and clinic in the country. Those who feel that Down syndrome shouldn’t be a death sentence should view this as a crisis.

Women who receive a prenatal diagnosis of Down syndrome or any other kind of genetic abnormality face constant pressure to have an abortion. The pressure comes in various forms. Sometimes, a friend or a loved one will come right out and say it: You should abort this child. It’s too difficult. Think of your future. Put this behind you and try again.

More often, the message comes in the form of a look, a reaction, or a body posture that says, “I’m not sure I know how to support you.” Don’t be that person, I implore you. If someone in your family — a brother, a sister, a child, a grandchild — comes to you with the news that they’ve received a prenatal diagnosis of Down syndrome or any other prenatally diagnosable genetic condition, open your heart to them. They need your support more than you can know. They need your first reaction to be perfect. You should be preparing it now.

There’s another kind of pressure that pregnant women face that is in some ways even more pernicious. It’s the constant, subtle pressure to abort babies with Down syndrome  – this time from doctors, nurses, and medical technicians at checkups and ultrasound appointments. At every visit, the professionals look at the medical chart and see that the baby has Down syndrome. Their expression changes and they say, “So, you’re going ahead with the pregnancy then?”

What they mean is: You’re an alien. You’re different than everyone else. You don’t have any idea what you’re getting into.

A perinatologist who examined my wife characterized the genetic abnormalities that she was looking for as ‘deal-breakers.’

My wife and I experienced this ten years ago when she was pregnant with our daughter. We just had a new baby this summer and not a single thing has changed. A perinatologist who examined my wife characterized the genetic abnormalities that she was looking for as “deal-breakers.”

Not every doctor or nurse is so insensitive. But let’s face facts: Many in the prenatal medical community are in the business of hunting down and eliminating genetic differences. It’s their job, and they are at peace with it. They don’t understand why you would ever give birth to a child with an “avoidable” condition such as Down syndrome. Put it behind you and try again. That’s the prevailing attitude.

In A World Without Down’s Syndrome? — a new BBC documentary — British actress Sally Phillips asks the right questions: “What kind of society do we want to live in? And who do we think should be allowed to live in it?” She visits a London hospital to interrogate Kypros Nicolaides, a leading maternal-fetal-medicine specialist, on exactly what makes a prenatal diagnosis of Down syndrome so problematic.

“For some people, having a baby with Down’s is an intolerable event,” he says.

“All I want to make this program for is to say, ‘You know, it’s really not a catastrophe,” says Phillips, herself the mother of a child with Down syndrome. “Why is everyone behaving as if it’s a catastrophe?”

“Whether they have the wrong perception about what the condition is, or the system has not emphasized to them the goodness that can come from having a baby with Down’s, I do not know. But is a fact,” says Nicolaides.

This “just providing a service” mentality that encourages abortion is common in the prenatal medical community on both sides of the Atlantic. Perhaps it’s a necessary and soothing self-justification for those whose job it is to seek and destroy children with Down syndrome.

I’m not against prenatal testing. It’s important for expecting parents to have time to prepare for what’s ahead. But the people who handle the information that these tests produce need to be educated. This is an opportunity for the pro-life community. We need to reach the ultrasound technicians. We need to reach the doctors. We need to reach the nurses. We need to reach the people who work in these offices. We need to turn their hearts somehow. We need to change that culture.

If our goal is simply to spread awareness of Down syndrome, there are many things we can do. We can post cute picture of our kids on Facebook. We can participate in the National Down Syndrome Association’s annual Buddy Walk. There’s nothing wrong with any of it. But so long as the medical professionals who administer prenatal tests think of genetic abnormalities such as Down syndrome as “intolerable” and as “deal-breakers” warranting the baby’s “termination,” we won’t have achieved much.

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