Tuesday, October 6, 2009

31 for 21: Day 6 {Let's Educate}

On October 8, 2008, President Bush signed the Kennedy-Brownback bill ... otherwise known as the Prenatally and Postnatally Diagnosed Conditions Awareness Act. Essentially, the act provides that families receiving a prenatal or postnatal diagnosis of Down syndrome or other conditions will be offered accurate and up-to-date information about the nature of the condition and also connected with support services.

This is something that is now imperative, since there has been a recent push for all pregnant women (versus just older women) to do early screening for Down syndrome ... typically around 12 weeks of pregnancy. Blood work and an ultrasound are involved in telling them whether or not their baby may have Down syndrome.

This is all fine and dandy ... however, women who learn that they are at high risk are often not given accurate and up-to-date information about Down syndrome. Thus causing them to terminate their pregnancy, sometimes after being pushed to do so by their OBGYN.

And that makes me want to throw up.

Because at the end of the day, these women are terminating their pregnancies without being properly educated. And in the end, that means that the Down syndrome population is slowly dwindling.

So what does that mean for my girls? Again, it makes me want to throw up.

Many people may not understand my stance on this, but really ... does it really look like my girls have such a horrible life, that they deserve to not be here?

I'm done. I don't even want to talk about it anymore.

Although, I will soon be talking about it a lot since my friend, Linda, and I are spearheading the Changing Lives Program here in Northern Virginia since it has yet to really been taken off the ground. I honestly cannot wait to get out there and talk with OBGYNs, give them accurate info and maybe even bring along my daughters so the doctors can have them permanently etched in their mind.

Things are so different today for people with Down syndrome, so different than even 10 years ago, let alone 30 years ago. Most people have such a negative connotation of what people with Down syndrome are like, what they will be like. Times are changing folks and I will admit that I am not someone who is cheering for the Down syndrome population to be eliminated on earth.

Wouldn't you feel that way if you were in my shoes?
Get It Down; 31 for 21


  1. I love it! I often think about bringing Lucy to OBs offices. Just to sit there. And let her be awesome.

    Our kids could make a huge impact if they are who these doctors were talking about, instead of a bunch of out-dated, ignorant, archaic statistics that do not personify people with Ds AT ALL.

  2. Are you kidding me? That is so absurd! If you KNOW your child is going to be born with a certain condition, be it DS or anything else. YOU DESERVE THE RIGHT TO KNOW THE FACTS! oy vey. and the real facts, not the archaic ones.

  3. I'll never forget the vision I had in my head when I found out Macy had DS. I can't believe I ever thought that now...there definitely needs to be more awareness...not even to just OB's but to all people.

  4. I think it's awesome you're getting involved in the Changing Lives Program, and taking a lead role to make sure the proper education is available! Education is the best tool...you have already helped to educate me and so many readers of your blog who are not directly experiencing DS on a daily basis.

  5. You brought tears to my eyes.
    Your girls are just so beautiful.
    I do not understand it either.

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