I mentioned a few weeks ago that we had been working with a journalist to tell our newborn screening story. I knew that the Milwaukee Journal Sentinel was working on something big for newborn screening, but I didn't realize exactly how big until I saw the spread in the paper tonight. Our story is one of many stories that were researched and written over the course of more than 6 months by an incredible team of journalists. Our video made me cry and our story will run in Tuesday's paper. We are so very blessed to be the happy side of this story and we are still grateful each and every day for the newborn screening that saved our son's life.
For those of you visiting this site for the first time because of the coverage in the Milwaukee Journal Sentinel, I urge you to learn about the life-saving potential of newborn screening and support the state public health programs who oversee it. I have yet to meet a single person in public health who has anything but the best intentions to do their part in saving babies. They do the best they can with the resources they have, yet many of them need additional resources, funding and staff to do it differently than how they are able to now.
If you are an expectant parent, I urge you to ask your doctors about newborn screening and to thank the hospital staff who perform this very important test to ensure the health and safety of your newborn. You might also want to check out this post for all the things I wish I knew when I was in your shoes. There is no more important test in your baby's life than newborn screening. It gave us critical information about how to keep our precious baby safe and healthy and for that, I will always be grateful.
Thank you for sharing your story! Mine is quite similar, although my daughter is now 11 years old. Healthy and active - a select softball and basketball player. I live in the Milwaukee area and read your story in the Milwaukee Journal Sentinel. My older daughter (now 12) was born in Littleton, CO, and after we found out about my younger daughter, had to have her tested for MCADD as well. CO didn't test for it in newborn screenings back then. Glad to hear they do now!!
ReplyDeleteI'm so happy to hear that you also have a happy story. We are fortunate that so many states can now test for MCADD with the advent of mass spectrometry in state labs. Now it's all about making sure procedures and best practices are followed from the moment that heel stick takes place until the moment that abnormal results are called out to families. It needs to be faster to prevent more tragedies.
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