Wednesday, October 22, 2014

Harmony Testing

This evening in my Facebook feed a FB friend of mine posted a picture of a brochure for prenatal Down syndrome testing.  All I saw was the picture of the brochure she posted and my heart sunk. My immediate reaction before I read the comments in the feed was to think about statistics around prenatal testing.    Most sites quote it to be approximately 90% of pregnancies with a prenatal diagnosis of Down syndrome are terminated.   Every time the topic comes up all I can think about is what our life would be like without Riley.

I was brave I scrolled down to read the post and the comments.  Nothing traumatic but apparently you can find out the sex of the baby as well with this test.  I can see why it would be so exciting for parents to have access to this test.  Information on the sex of the baby potentially as early as 10 weeks.  So of course I had to be nosey and ask about the testing and how the conversation went with the Dr.  This test was covered by insurance because of the age of mom and is more accurate that other tests.   So for some peace of mind and the ability to plan and educate yourself it seems like a pretty good option.

As a person who loves information and loves to plan I am all for getting the information and using it to be prepared.  I think that tests like this can be a positive thing in the hands of a Dr that shares information appropriately.  Families have to make decisions for themselves and my personal beliefs don't work for every family.  Now that we know and love Riley its pretty challenging to separate the that and remember not to take it personally.

Its pretty amazing that almost 8 years later and I can remember those moments like they were yesterday.  I remember being done with my first ultrasound and feeling like something wasn't quite right even as I said it was all good and we had counted fingers and toes and the baby was perfect.  I vividly remember getting the phone message from the nurse at the Dr's office telling me about the results of the screening test we had done.  My Dr always referred to the genetic clinic if the screening tests came back abnormal.  I think this is a very abnormal process and not to many women I've talked to had this experience.  The genetic counselor we talked too was very calm and a comprehensive family history and a ton of other information as collected and then based on all of that we were given the statistics.  I honestly don't remember the odds we were given.  I want to say 1 in 10 but I could be totally imagining that and dropping a 0.  It could have been 1 in 100.  I just knew that I had to know for sure one way or another and if that meant a three foot long needle than so be it.  That was a scary time in my world.  My imagination went wild with that needle.  In all honesty it really isn't that long. I hate needles anyway so it isn't like I was taking an up close look at it the day of the test.  The actually process was super easy and fast.  It was the waiting for results that nearly killed me.  Seriously 10 very long days..........

Well obviously we know how those results came back....

Those were scary days.  I wish I'd know a friend of a friend or had access to real people even if just on FB back then.  Lurking on a blog with pictures of a baby with Down syndrome I think would have helped relax my mind a bit.  And this is really the heart of the reason I end up blogging each year during 31 for 21.  Knowledge makes things less scary.  The more people know Riley and his friends with Ds the less scary it is for everyone.  Do you supposed 20 years from now a women and her family will discover they are pregnant with a child with Down syndrome and say "hey when I was in 2nd grade I knew this really awesome kid named Riley" ?

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