21Investigates: Indiana tests for 35 of the recommended conditions in newborn screenings

Published: Mar. 27, 2023 at 6:21 PM EDT
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FORT WAYNE, Ind. (WPTA) -In the state of Indiana newborns are screened for all but two of the conditions recommended for the screening panel. A mother who lives near Indianapolis tells 21Investigates she is thankful for that because her daughter’s condition was caught weeks after she gave birth.

Many parents admit they do not know much about the conditions on the national Recommended Uniform Screening Panel (RUSP) that are aimed at ensuring equity in newborn screening from state to state. According to the Indiana Department of Health, there is an advisory board and standard process in place to evaluate the conditions that should be added for screening.

Indiana screens for 35 of the 37 conditions that are recommended. The only two that are not currently being screened have recently been added within the last year, according to a spokesperson from the state department of health.

Amber Gibson says she did not know much newborn screening, only that it was required by the state. She did not know exactly what was tested for. However, Gibson learned very quickly just how important newborn screening is.

“Had it not been for the newborn screen, we probably never would have known,” she said.

Gibson’s daughter, 7-year-old Samantha, was diagnosed with Homocystinuria. It is a metabolic disorder that causes a block, preventing her daughter’s body from breaking down amino acids. If untreated, it could lead to blood clots, which would cause a heart attack or stroke. There is also a threat of neurological problems, elongated limbs, and learning disabilities.

“With us being able to monitor this early on, she developed normally,” Gibson says. “She was where she needed to be developmentally.”

Gibson and her family have learned to manage Samantha’s condition. That includes a special diet for Samantha, medications, and a formula that she will have to take for the rest of her life.

“Overall, she’s living a pretty normal life,” says Gibson. “The main thing is the diet and trying to keep the nutrients she needs but not build up the protein in her diet. Without the newborn screen, who knows where she would have been.”

It does take time, resources and funding to implement the screenings for any condition. That includes the costs of new screen kits, equipment and staff. The state health department is evaluating the two disorders recently added to the list of recommended conditions to be screened to determine if they will be added.

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