What we did and when we did it. Sometimes.

What we did and when we did it. Sometimes. People, places and events to remember.

Tuesday, March 20, 2012

World Down Syndrome Day 2012

This is a big day! Today is World Down Syndrome Day. Why March 21st? Down syndrome occurs when there are three copies of the 21st chromosome. 3-21. Get it? :)

I didn't know much at all about Down syndrome before Ben was born. Since then, I have learned a ton! To get the facts about Down syndrome, check out the National Down Syndrome Society. Did you know that there are more than 400,000 individuals with Down syndrome living in the United States? One in every 691 babies born in the United States has Down syndrome. That's a lot!

Down syndrome has also been in the news lately because a couple in Oregon sued their doctor, four years after their daughter was born with Down syndrome. The reason behind their "wrongful birth" court case? They would have terminated the pregnancy if they had known she had Down syndrome. The family won the suit. This makes me incredibly sad.

There are some new prenatal blood tests coming out that can determine Down syndrome in the first trimester. I think receiving an early diagnosis could be such a help in planning; I would probably have done this screening (called MaterniT21) if it had been available when I was pregnant with Ben. I think back on his birth and all the conflicting emotions, and I wonder if I had known beforehand that he had Down syndrome, would the stress of his first few days have been lessened?

However, the concern with this test is that women who receive a positive diagnosis will not receive balanced information about life with Down syndrome. Yes, there are health concerns. Yes, there is cognitive delay. However, there is also great joy and quality of life. If you want to read some excellent commentary on blood testing, please check out Patti's blog. She's just finished up a series of posts about the tests. There are some pictures of some pretty cute kids in there, too! Ben's in this one. :)

One of the main themes for families in the Down syndrome community is "More Alike Than Different." It's been true for us. Ben has more doctor's appointments than my other kids, and he receives physical and speech therapy. Otherwise, his babyhood has been just like theirs.

He sleeps:


He chews on his socks. And toys. And blanket.


He loves his Mama. :)


If you want to see some more cute kids and meet some more fun families, please stop by My Stubborn Miss for a World Down Syndrome Day Link Up. Many of these families and their blogs have been a real encouragement to me.

Oh - and I should give a quick Hallelujah! for the local Down syndrome community! This very night, our family is meeting six other families for a potluck dinner. Hopefully this is just the first of many get-togethers.

5 comments:

  1. Happy WDSD, Ben! We're glad you are part of the "family!"

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  2. I knew nothing about DS before Hailey was born! Ben is such a cutie!

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  3. He's a gem. You are a very blessed Mama.

    Tammy and Parker
    www.prayingforparker.com

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