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Strollerderby Salon: Is Abortion the New Normal for Down Syndrome Babies?

Image Source: National Association for Down Syndrome

Welcome to the second Strollerderby Salon. Today’s topic is the recent $2.9 million dollar “wrongful birth” award made to an Oregon couple. The couple claim that if the genetic prenatal screening process had been accurate, they would have found out that their baby had Down’s Syndrome in utero, and they would’ve had an abortion. They sued for the costs associated with her care and upbringing. The child is now four years old.

Danielle Sullivan wrote a great post about the case and some of its implications. This led to a discussion of the legal, ethical and statistical aspects of the case and of difficult choices women sometimes make in pregnancy regarding genetic screening and pre-natal testing.

Carolyn Castiglia: How can they prove they would have aborted? Maybe they told their doctor that. I assume to have won under the auspices of “wrongful birth” there would have to be a record of them saying they wouldn’t want to continue the pregnancy if there was an abnormality. The article doesn’t mention that aspect, though.

I’m sure these people are going to be hated on! They say they just want to be able to take care of their daughter, but other families with Down’s aren’t awarded millions to do that with. Zoinks.

Danielle Sullivan: Exactly, I have no idea how they can prove that unless they explicitly told their doctor they would abort, and I think those chances are unlikely. It’s definitely unfair to other parents of kids with Down’s. And all I can think about is how this child is going to feel about it when she grows up.

Julianna Miner: I teach a Public Health class and last week we discussed genetic screening. The rates of Down Syndrome identified during prenatal screening continues to rise as women continue to have children later in life, however the number of Down’s babies born continues to decline. It has in fact declined drastically. Because it is common for women, I should actually say – COUPLES, to choose to terminate their pregnancies based upon prenatal screening. In some countries the birth rate for Down’s babies declined by 70% in a 10 year period.

Take-away? The population health stats and vital statistics clearly show that it is now a normal and accepted practice to terminate based on genetic screening, and that absolutely includes Down’s.

I’m not trying to be judgey but at first, that shocked the living hell out of me. I know what choice I would have made. But now that I know all this, I guess that this couple’s choice is neither surprising nor uncommon. I would wager that in some communities, more Down Syndrome babies are aborted than born.*

[Editor's Note: I guessed right. According to the New York Times, approximately 90% of women who are informed during prenatal screening that they are carrying a baby with Down Syndrome choose to have an abortion. - JM]

DS: I find that really surprising too, and dare I say wrong? It just doesn’t seem right to me to decide that a Down Syndrome baby should be aborted when there are SO MANY people living good lives with Down’s. I kinda think then – what disease will be the next to become acceptable to abort for? Of course, anyone can abort any pregnancy if they choose, but the way it is becoming such a common practice to abort Down Syndrome babies seems so strange.

I actually was offered the test but declined it because I knew that I would not abort the baby even if it did come back positive, but I realize everyone is different. I just feel that it devalues the beauty of the babies and children with Down Syndrome by implying they don’t have a right to live.

CC: I’m so glad I had my daughter when I was 28, because I didn’t test for anything. I just assumed everything would be normal and it was. I’m not ethically against testing for fetal abnormalities, but doing so certainly does put people in a precarious position. Maybe it’s better not to know? I don’t know. I knew a girl with Down Syndrome when I was a kid and she had a very full, happy life.

JM: My husband’s sister is special needs so we knew what it would mean for our family and we decided that unless it was life-threatening, we would see it through. But we tested, so we’d be prepared and could prepare our kids, families, etc. And to make financial arrangements. Because working full time with special needs kids is not easy. I think maybe 1 in 5 of the mommies who participated with me in a “giving back” project last Christmas said they couldn’t work because their kids were special needs. Finding good daycare? Impossible. Finding a boss who gets it? In this economy? Forget it.

Madeline Holler: Carolyn, you asked about proof that they would have aborted had they known. The thing is, when you get these tests, there’s no place to say, “and if results show X, Y, or Z, I would terminate, but not if it’s A, B, or C.” In fact, abortion was never, ever mentioned in my experience getting genetic counseling and tests. The doctor just did the tests and handed over the results. I got a CVS with my last kid and I absolutely would have terminated if the results would have come back with DS or most any of the other genetic abnormalities they screen for. I knew this going in for the tests. No one asked us if we had made any preliminary decisions before, during or following the test. In fact, they couldn’t answer my questions about terminating, such as where to go if necessary. In fact, they seemed offended that I asked at their office, which, in turn, totally offended me. Sure, some people undergo these tests to be prepared, but I would guess a majority, like me, wanted info so they could decide whether to go through with the pregnancy.

CC: If there’s no proof they would have aborted then I think they have no legal grounds for “wrongful birth.” I think they could have won a medical malpractice case, but “wrongful birth” seems like such a bizarre idea to me, anyway.

DS: Apparently the way they determine proof is that the parents have to testify in court that would in fact have aborted, which many don’t want to do. I mean how many people will say that they would have aborted their child that is already born?

CC: Yeah, yikes. And then follow that up with, “No, I mean we love her. But, you know. If she had never been born that would’ve been cool, too.”

MH: Yeah, but let’s talk about the money/services side of it. These kinds of medical lawsuits are a direct consequence of the fact that, in the U.S., we are not guaranteed affordable services for our healthcare needs. Access to available services is also not guaranteed. This is why people sue doctors when things go awry during birth. I doubt it’s for revenge in most cases. Rather, it costs money to give kids with special needs a good life. This is where those “if you can’t afford to have a kid financially or emotionally, why did you have one?” people often speak up. And, in this case, I think that could very well be this couple’s point. In the end, you can love a child but also admit that you would have chosen not to have that child. Those are not incompatible ideas.

CC: They’re not incompatible ideas, but that’s hard for the child to process. I can relate to the extent that I have said in the past that I wish I hadn’t had a child with such a difficult person, but I’m happy I have a child. Though that’s not quite the same thing.

For more information on Down’s Syndrome, you can click over to the National Down Syndrome Society or the National Association for Down Syndrome.

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