Spreading the Word

I got a phone call from a journalist back in June asking if I'd like to share our newborn screening experience as part of a medical feature piece they were doing on newborn screening.  I talked to the reporter for about an hour, sent him a few pictures and talked to him off and on throughout the summer.  A few weeks ago, he called and asked if he could send out a photographer to take some photos and video of our family that they could use for the story.  We agreed and the photojournalist came out to spend some time with us this weekend.

Although I love telling our newborn screening story because it is has such a happy ending, it is always very emotional for me to talk about it.  I know other families who have not had happy outcomes like ours and I seem to meet more of them all the time in my advocacy work.  It is palatable to me that their story could be our story and we could be grieving the loss of our son.  It is also palatable to me that our story could be their story and they could be experiencing the joy of their child if only this thing or that thing could have happened differently. 

I would like nothing more than for every newborn screening story to be a happy one.  Families deserve a system that detects disorders rapidly and notifies parents immediately before their child can experience any harm.  I hope that this story conveys that message.