Senator David Pearce’s Capitol Report for the Week of Aug. 15: Protecting Missouri’s Newborn

Pearce Capitol Report 2016

The Missouri General Assembly first passed newborn screening legislation more than 50 years ago in 1965. Ever since then, we have been steadily adding to the list of conditions for which we test, giving countless Missouri babies the opportunity to receive treatment and grow up to lead healthy, happy lives. This year, state lawmakers successfully passed House Bill 1682 to expand screening requirements to include severe combined immunodeficiency (SCID), also known as “bubble boy disease.”

Newborn screenings test for the presence of nearly 70 distinct metabolic or genetic conditions that otherwise may not be detected for several days, months or even years. The screenings are performed by a medical professional before an infant is discharged from the hospital. If a baby is born at home, an appointment should be scheduled with the baby’s doctor to have a newborn blood-spot screening test. Preferably, this test should occur 24-48 hours after birth. Parents may refuse the screening if they state in writing that it conflicts with their religious beliefs or practices.

While there is no cure for these disorders at this time, many of the serious effects can be prevented or lessened if a special diet, medical treatment or other intervention is started early; sadly, however, failure to diagnose and treat these conditions early on often leads to mental retardation and/or death.

The need to once again expand Missouri’s newborn screening program was brought to the Legislature’s attention by Megan Wheeler and John Hedden of Kansas City, whose infant son Johnny was born with SCID. Johnny’s lack of an immune system could have been discovered and treated earlier had the state’s screening program required the detection of SCID at the time he was born. I sincerely thank these courageous parents for sharing their story and working to change a law that will prevent other Missouri families from losing a child to SCID.

According to the Department of Health and Senior Services, the life of one precious Missouri newborn is saved every other day thanks to newborn screening. Additionally, newborn screening programs save the state money in terms of offset medical and social services costs. House Bill 1682 is a great piece of legislation, and I applaud the governor for signing it into law.

As always, please feel free to contact me or my staff with any questions or concerns at any time. We look forward to hearing your comments and suggestions and trying to answer any questions you may have. You can reach us by phone at 866-277-0882 (toll-free) or (573) 751-2272, or by fax at (573) 526-7381.

Senator David Pearce serves Caldwell, Carroll, Howard, Johnson, Lafayette, Livingston, Ray and Saline counties in the 21st State Senatorial District.