1 in 100

Throughout Lynnea's battle with hypoplastic left heart syndrome, I wrote about what she was going through, giving a glimpse into what it is like to have a child with a congenital heart defect.  Along the way, I met and became friends with many other families faced with the same struggle that we were going through with Lynnea because, unfortunately, "heart babies" are all too common.  With Lynnea, we were not lucky enough to have her heart defect diagnosed before she was born, or even within the first 24 hours of life when the first signs and symptoms began to show themselves, and I still struggle sometimes with the frustration of knowing that the simple act of putting an oximeter probe around her newborn foot for a few minutes would have alerted us and her doctor to the fact that something was very wrong, and possibly could have meant a better prognosis for her.  There are many other parents, families, and health care providers out there that are working to make pulse oximetry part of the standard newborn screening process to help diagnose congenital heart defects early on in order to give these kids the best chance possible of survival.  A family that we met in the hospital one of the times we were there with Lynnea has a website full of great information on heart defects and the importance of advocacy and awareness.
http://1in100.org/finally-ready-to-screen-for-the-most-prevalent-birth-defect/