Arizona doesn’t screen for recommended disorders. Babies pay the price
Learning you are pregnant comes with a range of emotions, from exciting to terrifying and everything in between. You start to dream and plan.
How will you decorate a nursery, save for college, pick a name? When will you feel your baby move for the first time? Who will help as you learn your new routine and caring for a new baby and yourself?
You reasonably expect that all recommended lifesaving testing will be administered and your baby will have the benefits of the most up-to-date medical science.
But if you live in Arizona, you are wrong.
We can and must change that.
PJ died of X-ALD. We don’t test for that
PJ Syverson was born in 2003, a seemingly healthy baby boy. Yet in 2011, PJ was diagnosed with X-ALD, a genetic disorder that affects the nervous system and adrenal glands.
By that time, his condition was too advanced for treatment. By 2014, he was legally blind and could no longer walk, speak or eat. He died in 2015 in the arms of his mother Janelle.
The very same year, X-ALD was added to the RUSP (Recommended Uniform Screening Panel). The screening panel is a list of disorders that the secretary of the U.S. Department of Health and Human Services recommends for all states to screen as part of their universal newborn screening programs.
All tests on the RUSP have evidenced based treatment options that if administered early, will prevent disability and even death.
It’s been six years since PJ passed away. Yet Arizona still does not test for X-ALD and three other federally recommended conditions.
Delayed treatment hurt baby Stella
Stella was born in May 2019, a perfect baby girl with 10 fingers and toes, full of love and joy. Fast forward five weeks, and she was in the hospital fighting for her life.
Only because her mom Samantha was tirelessly advocating for her daughter that the newborn was diagnosed with Spinal Muscular Atrophy (SMA) Type 1 – a condition that had been added to the Recommended Uniform Screening Panel a year before Stella’s birth. The diagnosis led to a life-saving infusion for Stella at 5½ weeks old.
But because of delayed treatment, Stella endured PICC lines, infections, steroids, ventilators, loss of vision and muscle, and today she must use a wheelchair.
In Arizona, seven babies on average are born with SMA every year. Yet none of them have been caught early because Arizona only screens for 31 of 35 recommended conditions.
Senate Bill 1680 can change this
These types of stories are many and could happen to anyone. There are 84,000 babies delivered in Arizona each year, and each year in the United States, 1 in 300 infants are born with a condition that can be detected through newborn screening.
Senate Bill 1680 will require the Arizona Department of Health Services to add X-ALD and Spinal Muscular Atrophy to the newborn screening by the end of 2021 and require that the department add all other missing RUSP disorders within two years.
PJ and Stella’s stories should not have to be that of any other Arizona baby. Hug your babies tight, and remember PJ and Stella.
Please join the March of Dimes by encouraging your legislators to vote yes on SB 1680. Lives depend on it.
Breann Westmore is maternal infant health director for the March of Dimes Arizona. She is a mother to two young children. Reach her at [email protected].
