Tuesday, October 25, 2011

Day 25

Tera's physical therapist attended a conference this past weekend at Lutheran General called Continuum of Care for Children with Down Syndrome.  She had told us about it a few weeks ago and it really did sound interesting.  The first conference I might have attended in 10 years that would have the MOST impact on me; just not as an educator but as a parent instead.  However, we've had some busy weekends and as much as I want to educate myself on everything I can to help her, the idea of spending 8 hours away from her on the weekend didn't seem like time best spent.  There will be other opportunities...

However, her therapist did attend and took a packet with all the information provided at all the individual seminars for me.  It included all the PowerPoint presentations from each session.  I've only had time to flip through them, but I'm looking forward to seeing if there's any new information I can learn in there. 

What I would like to do is share some of the information/statistics from the conference with everyone seeing as how the whole point of this project is to raise awareness.  So the next time Down Syndrome comes up in conversation, consider yourself armed with information and feel free to pass it along and help spread the awareness.  Some of you may know some of this information already, but some of it seemed less widely known so here it is.

  • Down Syndrome occurs in about 1 in 700 live births
  • More than 60% of those conceived will spontaneously miscarry
  • About 20% are stillborn
  • (more commonly known) the incidence is greater with advanced maternal age
  • (somewhat more commonly known) 80% of children with Down Syndrome are born to women under the age of 35
  • In 1929 the life expectancy for an individual with DS was 9 years.  In 1947 it was 12 years.  Currently it is into the 50's, 60's, and 70's.
One of the big topics floating around the DS community is the upcoming release of a non-invasive blood test to check for Down Syndrome during pregnancy.  There is a lot of talk about how this test is viewed by parents of kids with Down Syndrome because they fear it will result in more terminated pregnancies if people find out prenatally.  An estimated 90% of pregnancies with a prenatal DS diagnosis are terminated each year.  Many current parents of children with DS feel that with the availability of the new blood test, this number will go up.

Personally, I can't imagine my life without Tera.  As I've stated before, the Down Syndrome is obviously a part of her, but I try not to let it define her.  But if I was given the choice when she was born to say, yeah, go ahead and remove that extra chromosome so that I can fully enjoy my child and not have to worry about all the therapies, doctor appointments, wonder how "high functioning" she'll be, if she'll have friends when she goes to school, how she'll interact socially, and how independent she'll be when she's older, I'd probably do it.  Controversial or not, that's how I feel 8 months into this little adventure.  Maybe I'll feel differently in a few years.  But it's hard not to love that face the way it is...

No comments:

Post a Comment