Thursday, November 21, 2013

Found Some New Heroes

I wanted to share an amazing amount of care and research that has been spent on taking a closer look at the tunraround time of newborn screening test results. Noah died as a result of some bad policies that delayed us knowing about his illness in time to do anything to save his life, and so this is 100% something that I fight for in my advocacy work.

About five or six months ago, a story came to us via the Save Babies Through Screening Foundation, where I am a member of the board and a volunteer. A baby in Wisconsin had been born, and when he was a few days old, he and his parents lived the same nightmare of a night that we did with Noah. The baby went into crisis for some unknown reason, and had to be rushed to the hospital. Unlike our story, their child survived due to some incredibly radical procedures, and forward thinking doctors. Unfortunately, he is now permanently brain damaged. Soon after this experience, his newborn screening test came in, indicating that he had a rare genetic disorder could have been easily treated, if only the parents and doctors had known about it.

The local news media in Wisconsin became involved, and launched a detailed and thorough investigation of the issue at large. Because we have lived this nightmare, they wanted to hear all about our story as well. I am so eager to get the word out so that I have some traction when I go and lobby in Washington DC, so of course I was eager to share it.

It has been an amazing experience start-to-finish. These guys have dug up answers that I never thought I would have. It has been validating, humbling, heartbreaking, healing and so much more. I am so very pleased to share the results of their hard work, and can't thank the Milwaukee Journal Sentinel enough. Everything was very thoughtfully and carefully done, and I am so grateful.

There are a whole series of stories, maps, databases, etc: Deadly Delays: A Journal Sentinel Watchdog Report

Our story can be found here: Lack of weekend hours adds delay, putting babies at risk

Or you can get the shorter version through this very cool video they did of us:


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