|I am 1 in 100|
Newborn screening in EVERY state should be MANDATORY, not optional to check with pulse oximetry. While pulse ox does not catch every heart defect it does catch more than doing nothing and it does save lives, this warrants the cost of a $15 dollar test on a piece of equipment that can be reused numerous times. Ask any parent that has found out about CHD from a coroner.
Newborn screening is not enough, however. We need to know how to prevent congenital heart defects and in order to do that we have to find out how they happen. Research needs to be funded. With the community that has formed in part to the accessibility from the internet, genetic links should be able to be established along with environmental and nutritional clues.
We can not stop with screening, we have to press on and move further. We have to look at the future. The survivors today will have children tomorrow and those children will need answers.