Friday, September 20, 2013

Washington DC Speech - Sept 2013

Thank you. I’m Sarah Wilkerson. I am here to speak to you today as a mother, and as a member of the board for the Save Babies Through Screening Foundation.

As some of you already know, my son Noah died at a few days old from undiagnosed MCADD. His diagnosis came in a day after his death – too late for my husband and I to be able to do anything to save him. Upon further investigation, we learned about a number of delays that are allowed for in the current system in many states across the country, and I urge you to consider creating clearer guidelines for how test samples should be handled, so that babies like Noah don’t slip through the cracks.

These guidelines would include:
  • Limit the window of time that hospitals have to take the initial blood sample to 24-48 hours of life.
  • No longer allow the use of the US Postal service to send in samples. A courier service must be used. As many as 16 states still allow for snail mail. This adds a couple of unnecessary days to the process right there.
  • Prohibit batching, which still happens in the more rural areas of the country where less is known about newborn screening. Better education in these areas is sorely needed.
  • Encourage labs to use their funding to keep the labs open on Saturdays. Or, at least vary shifts in the lab so that it is continuously staffed. 26 states are completely closed on weekends, and babies are born every day of the week, regardless of weekends or even holidays.
There is time and emphasis from the committee spent on treatment options, education and so forth, but the prompt turnaround of newborn screening test results is so important to consider as well, since without proper identification of these illnesses in a timely fashion, all of the follow-up steps don’t matter.

My husband and I would have given anything to have had the opportunity to care for our son the way that he deserved with the very well established treatment plan for MCADD children. It is our hope that you understand this as well and are willing to empower parents with the life-saving information that they deserve to have about their children in a timely fashion.

Thank you for your consideration.


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