Choosing to Have a Child With Down Syndrome

by Alison Piepmeier, author of Girl Zines: Doing Media, Making Feminism

[This article originally appeared in the New York Times blog, Motherlode. Read it here.]

I support abortion rights. I’ve had two abortions. I’ve body-blocked protesters trying to stand in the way of women entering a women’s health clinic that provides abortions. I teach about reproductive rights in classes. I have a bumper sticker advocating abortion rights. I’ve written about abortion and gotten hundreds of e-mails, many of them angry in tone, from those who disagree with me.

I also have a daughter with Down syndrome — and apparently, that’s not how abortion-rights campaigners are expected to play the game.

When I was pregnant with Maybelle four years ago, we learned we had a higher-than-average chance of having a child with Down syndrome. My partner and I wanted to have a child, and we decided we weren’t doing any more prenatal testing. Whatever potential person I was pregnant with was going to be part of our family, no matter what.

Many women facing similar news get additional tests. Last fall, a new maternal blood test was introduced which, unlike chorionic villus sampling (CVS) oramniocentesis, offers genetic information about the fetus with no risk of miscarriage. A second test came on the market this week. Media coverage has referred to these tests, and others like them in development, as “the holy grail of prenatal testing” and “a game changer.”

These new tests are marketed for their effectiveness at identifying Down syndrome. And if prenatal testing shows that a fetus has Down syndrome, up to 92 percent of them are terminated.

Ninety-two percent. Why is this rate so high?

In addition to being a parent and a reproductive rights advocate, I am also a scholar. I want to know the answer to this question: How do potential parents approach the issue of prenatal testing, and how do they make their decisions? I’m now interviewing what one friend calls “the 8 percenters,” parents of children with Down syndrome, and what I’ve found is that we’re not all who politicians like Rick Santorum think we are.

Reproductive decision-making is far more complex than easy sound bites suggest. Many of the women I’ve interviewed are emphatically supportive of reproductive rights, and have had abortions in the past. When they were ready to have children, they chose to go ahead with pregnancies even after the Down syndrome was identified. And they’re happy with that decision.

The complexity has a flip side: women like Emily Rapp, who recently reflected, at Slate, on the contradiction between her passionate love for her son, who has Tay-Sachs disease, and her belief that it would have been “an act of love” to abort him — as she says she would have, if her prenatal testing had revealed his condition. She explains, “That it is possible to hold this paradox as part of my daily reality points to the reductive and narrow-minded nature of Rick Santorum’s assertions that prenatal testing increases the number of abortions.”

“The bottom line is that a lot of prenatal tests are done to identify deformities in utero and the customary procedure is to encourage abortions,” Mr. Santorum said during an appearance on CBS’s “Face the Nation.”

Unfortunately, in one sense, he’s right. The message that sometimes accompanies positive prenatal testing for Down syndrome is: “You have a defective fetus. Let’s get rid of it so you can try again.” One mother I interviewed was told by her obstetrician, “the quickest, cheapest way to solve this problem is to terminate the pregnancy.”

But that doesn’t have to be the case. The prenatal testing is not what we should question, but the assumptions that accompany it. I agree with Ms. Rapp’s call for “a more nuanced discussion.” All disabilities are not the same. If our culture assumes that across the board, a child with a disability is defective, and a problem best avoided, then we’re encouraging people who want to be parents to make a decision based on bad information. And having an abortion because of bad information is a preventable tragedy.

I was terrified when we learned that Maybelle has Down syndrome, terrified that she would never walk or talk, that I would have to quit my job, that I would not be able to love her. Ultimately, I was terrified that she was, in fact, “defective,” and that she would not be a whole human being.

What I needed at that point wasn’t more restricted access to prenatal testing. It was better access to accurate information about what I could expect as the parent of a child with this particular disability. My fears were based in stereotypes about Down syndrome and disability more broadly, and they were simply wrong.

Abortion is an incredibly important option for people who are not ready to be parents. I had abortions when I wasn’t ready for a child in my life. Those pregnancies were accidental, and I’m grateful to have had access to abortion. I had Maybelle intentionally, prenatal testing and all, and I’m grateful for that.

One thought on “Choosing to Have a Child With Down Syndrome

  1. “Ultimately, I was terrified that she was, in fact, “defective,” and that she would not be a whole human being.”
    Princeton Divinity School graduate , author of “A Good and Perfect Gift” about her daughter Penny with Down syndrome, Amy Julia Becker, gave a powerful perspective on this discussion at the Princeton Down Syndrome Conference. While adjusting to Penny’s postnatal diagnosis of Down syndrome in the hospital, she overheard parents in the next room proclaim, “She’s perfect!”. Amy Julia, at first, couldn’t help but feel that this did not apply to Penny, wondering, “is Penny less perfect than the girl next door?”
    Amy Julia considered the meaning of the word perfect in our society. It means closely conforming to an ideal, without flaws. Like when women compare themselves with those airbrushed models on fashion mags. But the scholar in her wouldn’t rest, and she looked up the etymology of the word ‘telos’, meaning “perfect” in the New Testament Greek, and found it means “wholeness, completion, the end for which you are created.”
    When, instead of asking “what can she do?” and coming up short, she began to ask of her daughter, “who is she?”
    She is my beloved daughter. She loves me. Our identity comes from our belovedness. In this, Amy Julia found, Penny is complete, and is fulfilling the purpose for which she was created, to love and be loved.
    So many high achievers in society do not have this most essential part of their identity fulfilled. Its very hard to find a person with Down syndrome who has not.