Believing the Impossible
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Wednesday, December 12, 2007
Recommended book about Down Syndrome
If you know someone who loves a person with Down Syndrome, or anyone struggling to come to terms with a diagnosis of Down Syndrome, you might want to give them a copy of Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives. It's a book of honest essays by mothers who are full of gratitude for their children with Down Syndrome, despite the challenges involved. The foreword is by Martha Sears, whose seventh child with Dr. William Sears has Down Syndrome. I would have liked to read a book like this when our prenatal testing indicated a higher risk of Down Syndrome (I blogged about this here). This book includes an essay by Emily Zeid, who commented on my post after I recommended her blog about her beautiful Emma Jayne.
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3 comments:
Thanks Erin. This looks like a great book. -And I didn't know anyone could be at higher risk to have a Down syndrome baby except for higher age. We were not considered in that age group since we were only 28, but I know that isn't written in stone.
Hi Linda:
Yes, nowadays, most every pregnant woman is offered various screens for Down Syndrome (and spina bifida and I think a few other things as well). They do a blood test which measures the hormones and proteins in the pregnant woman's blood, and calculate that with her age to come up with a risk assessment. They do this by comparing the results to the results of pregnancies that did result in babies with Down Syndrome. Another thing they look for are markers on ultrasounds--short femurs, cysts in the brain, etc. If either or both of these screening tests come out higher risk, women are offered amniocentesis or another procedure called CVS which tests a sample of her placenta. However, the majority of the people who test "high risk" on the screening tests are actually carrying babies without DS. Many people call these "false positives" even though that's not really accurate. Even if they say you have a 1:3 chance, that's still a higher chance the baby doesn't have DS. The screening tests are just a risk assessment.
Anyway, after fully understanding this with my pregnancy with Kate, we skipped these tests with Will. We knew by this time we weren't going to do an amnio, and we certainly weren't going to terminate, so we just had an old-fashioned pregnancy. :)
Excellent. I'm going to pass this on to Becky. I'm sure she'll be interested, if she hasn't already read it. Thanks!
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