Facing Down Syndrome: Is It Better to End a Problematic Pregnancy?

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dave's photoI am my sister Barbara’s legal guardian. She’s five years older than me and has Down syndrome. She wasn’t even toilet trained until she was 6. Her oddly shaped mouth and tongue can’t quite say the few words she knows. She needs a lot of help and has lived in a group home her entire life.

Bluntly, I know Down syndrome is a big deal.

I am also soon to be the father of a new baby boy. I’m older, at 41, and my wife is older too, at 38. As the mother ages, the Down syndrome risk rises.

You’d think all this would make me hyper-alert to the risks of Down, and we would’ve signed up for any test available to see whether our child is at risk. But we didn’t. Why, you might ask?

These days, the tests are less invasive, and safer, than ever and recommended for all pregnant women over 35. So, why not know? After all, according to The New York Times, 90 percent of all women who receive a Down syndrome diagnosis from such tests abort.

So, again, why not know? Isn’t it better to end a problematic pregnancy?

Maybe we didn’t find out because when Barbara laughs, her entire face lights up with joy. Maybe because she sometimes snaps her fingers and shakes her considerable rump to music, even if it’s music I can’t hear. Maybe because for the past 20 years, she’s asked for the exact same present: a Kriss Kross Watch. Meaning, a watch picturing the one-hit wonder rap group Kriss Kross on it. At this point I can’t imagine anyone wants a Kriss Kross watch, if they ever existed, including the sole remaining living member of Kriss Kross. Maybe because I love her as she is.  

My wife also grew up near a boy with Down syndrome. They would play together and have the best time. The only problem was that she matured intellectually, and he never did. I realize this isn’t good. But knowing these people as we do and did, I still can’t imagine aborting our boy -- probably the last child we’ll ever have -- because he might have something wrong.  

I don’t know if we did the right thing. Either way, though, we are prepared to live with, and love, the results of our actions. Wish us luck. 

Do you think we should have tested for Down syndrome?


Image via David Serchuk

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Stephy Devaney

I am 36 and due Oct 14th. My husband and I didn't want the test either. We will love our daughter no matter what <3 I already love her with all of my heart.

nonmember avatar Erin

All children are a gift from God. My son, although not handicapped, arrived when I was 19. I was encouraged to abort him by my evil mother. He js 15 now and I can truly say my most precious Angel. I love everything about how wonderful and kind he is. We should all give thanks for any child.

linzemae linzemae

We didn't get our daughter tested. It would not change how much I love her.

Sarah Todrick

I'm not sure. Part me me says, no, don't test if you know it won't change whether you abort; the other part of me says test, so that if you do know, you can form a plan for care, education, support, resources, etc as soon as possible. I think that it gives you time to deal with your emotions and adujust your expectations as necessecary.  Then again, for some people it might make the situation worse to have the knowledge ahead of time.

Heather Rohrer

No. I wouldn't have gotten an amniocentisis on the basis of my age alone. When the doctors first told me my son (due this December) has a heart deformity and a brain defect that could indicate Downs Syndrome, I still refused the amnio. I believe all children are a gift to be cherished. That being said, when he told me the doctors might not do surgery on my son's heart without a genetic test, my answer changed. This is because another possibility is not Down's but a different and very deadly chromosomal problem. That being said, I will still not abort. I will make my son's life as comfortable as I can for as long as I can and give him a chance to know the parents that gve him life..... even if it is for a few hours or days. I just don't want a surgery to be delayed because the doctors need comfirmation. This will be one very loved boy no matter what!

nonmember avatar Guest010

I'm not going to tell any one individual 'yeah, you should abort'. However, I think it is good for everyone that most people do. At the end of the day, it means more resources for the families that for whatever reason (for ex, pre-existing and close relationships to those with Down's) will not make that choice.

Simon... SimonzKedge

I tested, but not to terminate, to be prepared.  I would deliver at a smaller local hospital if there were no known health issues.  Otherwise I'm going to be delivering at the larger hospital with a NICU an hour away.  We'll love our baby, no matter what though.  :)


 

nonmember avatar randi

I would never judge someone who decided to keep a baby that they knew had special needs, but if I found I was carrying a baby with Down Syndrome, I would terminate. I think it's hard enough to raise a child who is born without disabilities, and I know I couldn't do it with a special needs baby. For those of you who feel strongly that every baby is a "gift," that's great for you. I don't feel that way, and apparently 90% of the people who were diagnosed with a Down's pregnancy agree with me. Please don't judge - just be happy with your choices.

KathyTh. KathyTh.

I terminated a Down Syndrome baby many years ago, and have had three healthy children since then. No regrets. Everyone has to make a decison that they can live with, and no two people are the same. God bless.

nonmember avatar Victoiria

I think I would test after a certain age or if certain genetic desease were a factor. Not necessarily to abort, but to prepair. I read an artical about a woman who didn't know her child would have Downs, and when she heald her she cried for 3 days. She loves her now with all her heart, but that surprise was a lot to take in when combined with the crazyness of birth and hormones raging. She says she wouldn't have aborted anyways, but to know would have helped her deal in the moment.

Now if something like Tay-Sachs was a genetic possiblilty for me I'd have an amnio, and if that was positive I would abort. I'm not willing to put my child, myself, and my family through that experience. I'm sure mothers out there disagree and think the few years they had with their child were worth it, but I don't think I could handle it emotionally.

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