A Day in History.

So it is official!

HHS Secretary adopts recommendation to add Congenital Cyanotic Heart Disease to the Recommended Uniform Screening Panel (PDF – 212 KB) 09/21/2011

I just want to thank a dear friend of mine, a friend that I am so honored to know, for 2 straight years she spent fighting for this.  Fighting for every newborn baby to have the chance to be screened for a critical congenital heart disease. 

Baby’s are tested already for hearing and a whole host of metabolic disorders but the most common defect in all newborns was not being tested for.  It was a huge gap that caused many unnecessary deaths…but it is now closed.  Thank you Annamarie, and all the organizations that helped and supported the effort as well. 

Thank you, thank you, thank you.

Your commitment is nothing short of awe-inspiring. 

Thank you.

For information about Annamarie, #1in100, and the incredible work that she does in not only Congenital Heart Disease but also in newborn care in general please take a look at and support these organizations.

http://1in100.org/

http://newborncoalition.com/

If you would like to learn more about why routine testing of newborn oxygen saturation is so extremely important please read this story.  It is a heartbreaking story of a fellow heart Mom whose daughter lived only a few short days because of an undiagnosed CHD.

http://www.corasstory.org/

And please remember that as states, hospitals, and clinicians slowly begin to implement the new recommendations, please ask your health care providers to check the oxygen saturation of your newborn at birth.  Even writing that in a sentence sounds so ridiculous.  They check a newborns hearing at birth and not their oxygen levels? YES. 

And to make things even more ridiculous sounding, checking a newborns oxygen level costs pennies, is non-invasive, and takes just a few minutes. 

In the words of Annamarie  Know More.Do More

So proud to call you my friend.

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