As I mentioned last month, our family's newborn screening story was featured in a medical feature piece on the importance of timely newborn screening. It's always hard for me to put my family out in the spotlight and trust me there were MANY conversations between my husband and I about whether we should allow journalists into our home and into our life. In the end, we wanted to make sure that people know that newborn screening works and can be life-saving. Our desire to raise awareness outweighed our desire for privacy, so we went ahead with the story.
Even though our story was the happy one, it was still a very difficult article to read and the video brought tears to my eyes every single time I watched it. The pain of the other family and for every family that has suffered due to delayed screening is palatable. It is hard to think about how easily our story could have been the same as theirs if only one aspect of his newborn screening had been delayed. Thankfully, our hospital sent our son's screening card to the lab soon after it was performed, it was processed quickly at the lab and we were notified immediately with instructions on how to care for him through the night to keep him safe. Every child and every family deserves the happy story. Every child and every family deserves to have the peace of mind knowing that there are guidelines and best practices in place at every hospital and every laboratory that will make this happy story possible.
I was THRILLED when I read the Journal's follow-up story. The Senate's health committee is talking about newborn screening and they are moving to reauthorize the Newborn Screening Saves Lives Act while also making some important changes to address the timeliness issues identified in the Journal Sentinel articles from last month!! Telling our story, along with the many other families who were brave enough to share their stories with the Journal Sentinel reporters, is making a difference!
No comments:
Post a Comment