Thursday, September 25, 2014

Sharing Our Preemie's NICU Journey With Congress


Earlier this week, I gave a heartfelt presentation at a congressional briefing on medical research and advances in Neonatal Intensive Care Units (NICUs). I was excited to participate in the briefing to celebrate my precious gift, Emily Marie Stevens. 

The opportunity to share my preemie story was completely unexpected -- and was incredibly meaningful. It was my first chance to share our preemie's 67-day NICU journey with an audience in a crowded room and to individuals with influence over U.S. public policy.

I am incredibly thankful to the March of Dimes for asking me to serve as a speaker, as well as the Association of American Medical Colleges (AAMC) for organizing the briefing. In addition, I am pleased that my husband, Craig, was able to attend the presentation, as well as our daughter, preemie fighter, and NICU graduate, Emily.

As a former congressional staffer, I was overwhelmed to see more than a dozen friends and colleagues at the crowded briefing. It was touching to see so many friends take time out of their busy schedules to see me -- and learn more about my family's personal NICU journey.

Several staffers from the U.S. Senate took the time to walk over to the House side for the briefing -- and a few lobbyists even made the trek from downtown to the Rayburn House Office Building. These small acts of kindness were incredibly moving and didn't go unnoticed.

 

In fact, I was so touched by the amazing support, that I started to weep less than a minute into my presentation, before even beginning to share my story. While my speech was emotional, I hope I recovered with grace and poise, and was able to provide congressional staff and the public with a greater understanding of NICUs from a parent's perspective.

In addition to sharing my story, I was able to listen to and learn from other great speakers.

Dr. Alan E. Guttmacher, Director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) at the National Institutes of Health (NIH), spoke about many different NIH research studies aimed at pre-term birth.

As a mother who experienced reverse end diastolic flow during pregnancy, I was very interested in Dr. Guttmacher's description of the Human Placenta Project. This project is working to improve current methods and develop new technologies, for real-time assessment of placental development. Researchers are also planning to develop interventions to prevent abnormal placental development, and improve pregnancy outcome.

Dr. Jeffrey S. Gerdes, M.D., M.B.A., Associate Chairman, Department of Pediatrics; Chief Medical Officer for Network Development; Associate Chief, Division of Neonatology, The Children’s Hospital of Philadelphia (CHOP); and Associate Professor of Pediatrics at the Perelman School of Medicine, spoke about many of the treatments I received during pregnancy to improve my daughter's outcome, such as steroids and magnesium. He also spoke about Surfactant, which Emily took, in order to help her lungs develop.

Dr. Atul Grover, the AAMC Chief Public Policy Officer, served as a moderator and couldn't have been nicer.

I know first-hand that Emily wouldn't be where she is today without the care she received from the doctors and nurses at our Level III NICU. And, Emily wouldn't have survived without all of the research and medical technology that is available today.

Medical research and technology has allowed patient outcomes among high-risk newborns to greatly improve over the last few decades. Much of this improvement is due to the medical research supported by the NIH and conducted at medical schools and teaching schools across the country. For example, for every decade since 1960, the survival rate for premature infants has improved by one week. 

It is my hope that Congress will continue to provide funding for vital research at NIH and academic centers so that babies born early survive and lead healthy lives.

8 comments:

  1. Yay!!!! I'm so excited for you. I'm sure you did an amazing job. Way to go!

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  2. Wow! What an incredible opportunity! Go you!

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  3. This is just so exciting! Congratulations for getting the opportunity. What a blessing!

    Katie @ Cup of Tea

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  4. What an amazing opportunity to share your story and raise awareness!

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  5. Congtaulations! Such a wonderful opportunity :D

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  6. I am very proud and excited for you.

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  7. I am very proud and excited for you.

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