"What works for us" Wednesday

Prenatal (and postnatal) diagnosis is a very tender subject for families. I'm not posting about pro-life or pro-choice so don't get all anxious on me. But I am posting about information. Data and resources is "What works for us". We received a prenatal diagnosis and we did read and learn alot after that 20th week diagnosis.

Recently Congress passed legislation to ensure that pregnant women receiving a positive prenatal test result and parents receiving a postnatal diagnosis will be more likely to receive up-to-date, scientific information about life expectancy, clinical course, intellectual and functional development, and prenatal and postnatal treatment options . It offers referrals to support services such as hotlines, Web sites, information clearinghouses, adoption registries, and parent support networks and programs specific to Down syndrome and other prenatally diagnosed conditions. http://www.ndss.org/images/stories/NDSSresources/pdfs/kb_press_release.doc

Tommy and Liam were born 12/12/2006, so I wanted to post data here about what happened in Washington state that year. During 2006 in the State of Washington, there were 86,845 babies born. Only 77 of those babies have a diagnosis of Down syndrome. That is only 9/10ths of 1% ( .0008866) were born with Ds.

Many, many more than that were prenataly diagnosed. A 2002 literature review of elective abortion rates found that 91–93% of pregnancies in the United States with a diagnosis of Down syndrome were terminated.

Interesting other facts for 2006 (State of Washington) are the number of babies born with Hirschsprung Disease, 9. Less than 1/10th of 1% (.0001036) were born with a diagnosis of HD. Although that is not a prenatal diagnosis, I thought it interesting enough to post here because I would love to learn from other HD families in Wa State!

Extremely interesting was the fact that in 2006 there were only two births in all of Washington State that had one or both babies born with Ds. Both were in Whatcom County. One is us (of course), and the other set are the most beautiful (and active) girls you will *ever* meet.

I was never aware of how many families in the US (and abroad) are welcoming kids with Ds or other developmental diagnosis. Here is Reece's Rainbow website again http://www.reecesrainbow.com/angeltree2008.htm. There are so many families in the United States welcoming adoption *and foster care* of children with Down syndrome and any developmental disorder.

A few inspiring folks (both are must reads):
http://www.hidden-worlds.com/judithscott/
http://www.karengaffneyfoundation.com

It's been almost two years since the twins were born. "What works for us" during the prenatal diagnosis was information (and lots of faith).