Sunday, September 16, 2012

My Speech

Hello. My name is Sarah Wilkerson. I am here today as a parent, and advocate for the Save Babies Through Screening Foundation. I would like to tell you about my son Noah. Noah lived for four precious days in June of 2009, before he suddenly stopped breathing and quickly passed away. My husband and I were devastated, and desperate for answers. The next day, his newborn screening test came back, indicating that he had a rare genetic illness called MCADD. MCADD is 90% treatable if you have the diagnosis, but his test result came back too late for us to be able to do anything about it.

My husband and I moved to the state of Colorado before Noah was born, but are originally from the state of Missouri.

Missouri has four state labs that run continuously. They have policies that dictate when blood samples are collected, when and how the samples are shipped to the state labs, and when the results are turned around to parents. As a result, Missouri hasn’t lost a child to a disorder like MCADD since 2004.

Our new home state of Colorado didn’t have a newborn screening policy in place that was as aggressive as what Missouri had to offer. Colorado hospitals could use the US postal service, and wait to batch test samples together until they had enough to warrant sending a package to the state lab. The state lab also didn’t run on weekends, holidays, or evenings, so depending on the day of the week your baby was born, you could be in for a bit of a wait before you hear back.

If we had never moved, if we had stayed in Missouri, it is likely that Noah would still be here. Quite literally, something as trivial as a state border line ended up meaning life-or-death for my son.

Today, I ask you to standardize the turnaround time of newborn screening tests in the United States. In my view, this would include:

  • Recommending that hospitals collect the initial blood sample at 24 hours after birth
  • Using a courier service to get the sample to the appropriate state lab, no longer condoning the use of the US Postal Service
  • And, recommending that state labs process and report the test results 48 hours after receiving it.

It is vitally important that these recommended procedures be put into place, and that the Secretary of Health and Human Services adopts them because in the cases of infants like my son, days, hours, even minutes, matter.

In the end, parents like me deserve to know that their child has a potentially fatal illness as soon as is humanly possible so that they have the opportunity that I didn’t have – to fight for my son’s life.

Thank you for your consideration.


Blogger Kristine Brite McCormick said...

Oh Sarah, your speech was so good! I'm so sad I didn't get to meet you, and enjoyed your observations of the committee.

10:26 PM  
Blogger Jennifer.Meerpohl said...

So proud of you!! This says so much in so few words. I think you accomplished your misssion. Noah was such a blessing and his fight is so worthy. You are my hero.

7:39 AM  

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