The mother of a baby with down syndrome describes what the doctor said to her after the delivery:
“She was tiny, but she was great, like she was just the cutest thing. And then my husband comes in, and he looked weird and immediately he said, “The baby, something is wrong…” And all I could think of was that she’s blind, I guess that was probably the worst thing I could ever have imagined. But the doctor had just called him and told him that Rose was a Mongoloid. We took a half hour to get it out of him, like he couldn’t finish telling me the story, and then the doctor came in and said, “What your husband just told you is right.” He was, like, very down on the whole thing, very negative. He said, “The only blessing is that they don’t tend to live very long.” So he thought it would be a good thing if our new baby would die. What more can I say?”
Rayna Rapp Testing Women, Testing the Fetus: the Social Impact of Amniocentesis in America (New York: Routledge, 1999) 266 – 267
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As the former Board President of a leading Ds Parent Group and former Vice President of a national Ds association, I was quite taken aback by this post. Many readers will not delve so deep enough to find that the quote is from a book published 15 years ago.
In the past fifteen years, the Down syndrome community has made great strides in educating doctors/nurses in delivering a prenatal diagnosis of Down syndrome. The Kennedy-Brownback Act now requires that women be given the most up-to-date literature and information when a pre-natal diagnosis of Down syndrome is revealed. There are booklets that have been made available by different sources and local parent associations have been hard at work training physicians as well as offering quick video links to assist the physician with delivering the diagnosis.
There is also an organization called Your Down Syndrome Pregnancy which is dedicated to supporting women carrying a child with Down syndrome.
Out-of-date stereotypical quotes are not helpful to mothers and fathers who have been blindsided by this diagnosis. In 2014 raising a child with Ds is dramatically different than it was in 1999 and the community at large continues to make strides in medical research and support, behavior, education, inclusion, independent living and self-determination.
Instead, let’s focus on the benefits of making the right and moral decision. I have two children in their twenties who are my pride and joy. Both competed four years of college, both work, both live on their own, both have active social lives, both give back their communities and one of them has Down syndrome.
Bridget Murphy