Preventable Tragedies: Have your Newborn Tested Now!

By Representative Myra Crownover (R-Denton)

Is anyone you know or love expecting a baby? Make sure they have their newborn tested for the full panel of disorders recommended by the American College of Medical Genetics and the March of Dimes.

The State of Texas needs to expand our newborn screening program to encompass all disorders for which there is a test and known treatments (sometimes as simple as a change in diet) to prevent severe disabilities. Texas presently screens newborns for eight disorders, while a majority of states screen for 25 or more. Babies in Texas are currently at a huge disadvantage simply because they are born in our state – a state with the second largest birth population in the U.S.

Imagine the devastation felt by Melissa and Joe Skidmore of Austin. Their son, Peter, was born healthy and in every way acted as a normal newborn would act. At 7 months, he was a laughing, playful little boy, just starting to stand with mom and dad’s help. Suddenly he became critically ill and the diagnosis of his condition was a mystery for weeks. Finally, doctors gave him a full range of tests and detected Glutaric Acidemia Type 1. For Peter, it was too late. The acid that built up in his system attacked his motor development brain cells. Now, Peter has almost no motor skills; he can’t talk, he can’t sit up on his own, he can’t reach for his toys and he will be wheelchair-bound for his entire life.

Here’s the tragedy – if Peter had been born in his mother’s home state of Wisconsin or his father’s home state of Pennsylvania, Peter would have been screened, the disorder would have been detected, and Peter’s diet would have changed within days of his birth. If he had been born in these other states, Peter would probably be a completely healthy 4-year-old today – running, jumping and dancing to Austin’s live music that he enjoys so much.

The American College of Medical Genetics (ACMG) and the March of Dimes recommend that all newborns be screened for 29 disorders at birth. Because of these recommendations, many states are re-evaluating the number of disorders for which their state screens and expanding their programs, including Florida, California and New York. Texas is behind and according to the National Newborn Screening and Genetics Resource Center, Texas ranks in the bottom third of states in the number of disorders for which we screen.

As a proud Texan, a mother and a soon-to-be grandmother, I am sponsoring legislation (House Bill 790), which will provide funding allowing the State of Texas to expand newborn screening by utilizing screening methodologies including Tandem Mass Spectrometry. Until House Bill 790 becomes law, individuals should take the initiative to have their newborns screened.