Newborn screening is a hot topic in this country whether you realize it or not. Most of us deliver our children and are never even aware of the testing that they go through within the first hours after birth. Every child born in the United States is tested for a variety of genetic conditions that need immediate treatment. Without that treatment permanent damage and even death can occur. So why would anyone be against newborn screening? The cost to the government, personal privacy issues, and the fear that the government keeps track of us all by the drop of blood taken from our tiny heal as a one-day-old child are three of the reasons.
There is a core group of conditions that is tested for in every state, but each state is allowed to decide whether or not to test for certain others. The amount of conditions tested for ranges from state to state from 29 to 57. Quite a difference. That means that if your child is born in Mississippi versus Texas, she will be tested for 28 more conditions that could be life-altering. It wasn’t until recently that cystic fibrosis was tested for in all states. Our state made the decision to test for it less than a year before my daughter was born. She was diagnosed within days and it allowed us to start her on preventative treatments to fight off lung disease as soon as possible. We are grateful for that.
Through all of the debates and dilemmas, one group works diligently to ensure all children are tested for every condition that could be threatening them in their early lives. Save Babies Through Screening Foundation, Inc., is a non-profit group working out of New York to educate the government on a national and local level as to why it is important to screen newborns for numerous genetic, treatable conditions. They even push to see non-treatable conditions screened for in the hopes of discovering ways to make those conditions treatable.
The foundation also works to improve health insurance coverage and to educate parents on the testing done on their children at birth. They will also help families obtain supplemental screening to fill the gaps of all the untested conditions in their state.
The group has gained the support of actor Scott Baio (Charles in Charge) and his wife Renee. Their daughter tested positive for a metabolic disorder at birth, but in follow up testing was found to be healthy. They were relieved but their hearts went out to the families who aren’t so lucky. They joined forces with Save Babies Through Screening and speak on behalf of the group at events nationwide.
To learn more about your state’s testing guidelines and how you can ensure your child is tested for all conditions visit the Save Babies web site. They have helped save the health and lives of children like mine, and they deserve our support.