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From an ICU Incubator to Washington DC

by Keltcie D. on Tuesday, October 15, 2013

I'm Joye Mullis. Four and a half years ago, while sitting beside my infant son’s incubator in the Pediatric Cardiac Intensive Care Unit at Duke University Medical Center, I could have never imagined his story playing out quite like it has.  Not only has Ethan endured multiple surgeries and procedures and survived cardiac arrest, but his story has also been a catalyst for change for babies born across our state and country.

The story of Ethan’s heart was one of many heard by state lawmakers here in North Carolina this past spring.  Thanks to the advocacy efforts of so many, the pulse oximetry screening bill was signed into law by Governor McCrory in May! Then, in late September, our family had the incredible opportunity to take Ethan’s story a step further. At the invitation of Senator Kay Hagan, we traveled to Washington D.C., where I testified for the Newborn Screening Saves Lives Reauthorization Act before the U.S. Senate Committee on Heath, Education, Labor, and Pensions.

We all know that comprehensive newborn screening saves lives and that early-intervention is crucial when problems are detected.  Pulse oximetry screening is what helped discover Ethan’s heart defect after his birth and enabled him to receive the life-saving care he needed right away.  His story, and the story of so many other babies like him, is the driving force behind my advocacy efforts today – from North Carolina to Washington, D.C.

It was such a honor to share our family’s journey at the national level and it was an experience that won’t be forgotten.  Gratitude and joy filled my heart as I watched my son, who spent his first few weeks fighting to live, explore our nation’s capital with zest and excitement.  We have many people to thank for his health today, and it all began with a simple test.

Here’s the WWAY Wilmington tv news clip about my testimony:

 

 

 

 

 

 

 

 

 

 

 

 

 

Please consider contacting your state’s Senators and ask that they support the Newborn Screening Saves Lives Reauthorization Act this fall.

 

 

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Comments (2)

  • Thank you for all your hardwork Joye!  You are an amazing AHA advocate and volunteer and we could not do what we do without people like you!

    — Kacie K.

  • Joye you did such a great job and in NC we are so proud of all that you are doing to raise awareness and save lives!  Thank you for all you are doing.  What an inspiration!

    — Elizabeth V.

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