Let Congress know: Newborn screening needs continued funding!

A few years ago, I took care of a beautiful young family after the birth of their baby girl.  They were now a family of four.  Everything about the pregnancy and delivery were seemingly perfect.  She experienced the “natural” birth she wanted, and her toddler was simply ga-ga over her new baby sister.  This beautiful family was discharged home on a Friday afternoon to start their new lives together.  Over the course of the next day and a half their world came crashing down.

On Sunday they could not wake the baby to feed and something just wasn’t right.  They rushed her to the emergency room, and it was too late.  Their precious new baby girl could not be saved.  On Monday they received a call from the pediatrician’s office letting them know that something had come back on the baby’s newborn screen and she needed to be seen immediately, sadly, it was too late.  This is the reality for families across the country.

What if I told you that lifelong disability, or a tragic death like this, could be prevented by a simple change in diet or a medication?  What if this baby could have been saved if her testing had been finished sooner?  Would you want to support that?  By supporting state newborn screening, you can!

Newborn screening is one of the United States’ biggest public health successes in the last 50 years.  Newborn screening is a simple blood test that can detect certain genetic, endocrine and metabolic disorders.  Each state has their own newborn screening program with slight variations in testing, but the federal government plays a major role in supporting those programs.

There are three major organizations that are involved in the processes.  The Centers for Disease Control and Prevention (CDC) is responsible for the accuracy and development of testing.  The Health Resources and Services Administration (HRSA) provides support to the committee that develops the recommendations and assists in the sharing of those recommendations between states.  Finally, the National Institutes of Health (NIH) funds the advancement of the newborn screening science through research.

Without these federal funds and support of the newborn screening programs we would not be able to continue to save the lives of thousands of babies each year, through detection of disease giving us the knowledge to treat.  The Newborn Screening Saves Lives Reauthorization Act of 2019 (H.R. 2507/S. 2158) will not only increase and renew funding for the CDC, HRSA and NIH but it will also fund a study to develop policy recommendations for newborn screening.  This bill has passed the House and is currently being reviewed by the Senate!  Let’s keep it moving and keep saving babies through early detection, diagnosis and intervention!

Sarah Flynn-Savoie, NICU RN is a neonatal nurse practitioner student at the University of Connecticut.