Newborn Screening Awareness Month
The life of every newborn is precious. Sadly, some with certain disorders may look and act healthy, but have invisible medical conditions that can cause serious illness, developmental delays, disability or even death. Thanks to newborn screenings, more than 50 disorders can be detected, providing opportunities for early interventions can prevent the need for long-term care and even save lives. September is recognized as Newborn Screening Awareness Month to help spread the word and highlight important information about these screenings.
Every baby needs screened, regardless of whether they are born in or outside of a hospital. They typically happen shortly after birth, and are conducted by a health care provider. I didn’t know much about newborn screenings until I met the Vollmer family from Indiana and their 3-year old son, Graham, who was born with spinal muscular atrophy, a rare and oftentimes deadly condition where muscles become too weak to perform basic functions like walking, talking, eating or drinking. Children who received treatment for SMA through a FDA-approved drug therapy were able to achieve unprecedented motor milestones.
Testing before symptoms arise gives families the opportunity to fight these diseases and help their kids go on to lead healthier lives. Although Graham didn’t receive treatment until his symptoms were discovered, his family and I worked together to make sure that others had a better chance by getting a state law passed adding SMA and severe combined immunodeficiency to the list of disorders newborns are screened for in Indiana.
Then I learned about one-year old Bryce Clausen and his struggle with Krabbe, another rare genetic disease that destroys nerve cells in the brain and throughout the nervous system. I sponsored Bryce’s Bill, adding Krabbe disease, Pompe disease and Hurler syndrome to the list of required newborn screenings. Bryce and his family were at the Statehouse when the governor signed this legislation into law. Sadly, just a few days later Bryce passed away. Had Bryce been screened at birth for Krabbe disease, his family could have sought a stem cell transplant that might have slowed or arrested the disease progress.
With several families impacted by rare diseases, I also co-authored a law this year adding adrenoleukodystrophy, or ALD, to the state’s newborn screening panel. This genetic disease predominately affects males and causes injury to the brain, leading to behavioral and neurological issues.
Many of these disorders have no cure, but there are treatment options available for children diagnosed before symptoms appear. Thanks to these families and their children who have endured so much, every baby born in Indiana is now tested for more than 50 conditions. They came forward and shared their stories, and now others could be saved and enjoy a better quality of life.
For more information on newborn screenings in Indiana, visit www.in.gov/isdh.
Gutwein (R-Francesville) represents House District 16, which includes all of Pulaski County and portions of Fulton, Jasper, Newton and Starke counties.