A Heartland mom is on a mission to raise awareness about newborn screenings. She says if more screenings were required and covered in Missouri, children's lives would be saved.
Cyrene Caringer's inspiration is her daughter, Cattarah, who was born with a rare disease. A type of her disorder can be caught by newborn screening tests, the problem is getting the word out the tests can be done.
Caringer says, "The pediatricians say it's the hospitals responsibility, the hospitals say it's the pediatricians responsibility. I don't care who's responsibility it is, we need to save children's lives." Caringer says it was a miracle that saved her daughter, Cattarah's life. "We knew there was something wrong. I kept telling the doctors something's wrong," she says.
When Cattarah was 12 weeks old, it was obvious something was wrong. She wasn't developing like other children her age, and doctors didn't know what was causing it. "They basically had me call my mother. She had irreversible brain damage and wouldn't come back to me."
But she snapped out of it and it turned out she didn't have brain damage at all, but instead what doctors call a metabolic disease. It keeps her body from processing protein, which turned out to be good news. "They are very treatable," Caringer says. But it also lead Caringer to investigate, could doctors have spotted her daughter's disease earlier? She says, "I did find out in Missouri law all newborns will be screened for 17 disorders, but there are no funds to pay for it and children aren't being screened."
So Caringer found a laboratory that can do the screenings. Neogen screening tests for more than 40 disorders. The screening costs 25 dollars. Now, Caringer's on a mission, talking to local doctors and hospitals about encouraging parents to have their babies screened and possibly save their lives. "If we can just get the word out that public screenings are out there and are reasonable."
States have different laws on how many newborn screenings are covered. It may be four years before Missouri gets the funding available to cover the additional 17 tests.
Click here for more information on newborn screenings.