Some Hospitals Still Don't Follow Newborn Screening Guidelines, & It's Deadly

A new report from the Centers for Disease Control has found that some hospitals are failing to implement newborn screening guidelines for hearing loss and congenital heart disease. If that seems like a pretty big oversight, you'd be right: both early hearing detection and intervention programs, as well as testing for critical congenital heart disease (CCHD) aren't necessarily included as part of the U.S. Department of Health and Human Services' recommended uniform screening panel for all newborns. The CDC report, published in Friday's Morbidity and Mortality Weekly Report, stresses that both newborn screenings for hearing and CCHD must happen for every newborn before they leave the hospital.

The CDC reported that in the United States permanent hearing loss presents in 1.6 out of every 1,000 infants at birth. By implementing universal hearing loss screenings at birth, interventions to assist both babies and parents can start right away, as opposed to waiting for developmental signs to show up months after a baby is born.

Meanwhile, CCHD includes a group of 12 structural heart disorders. The CDC reported that heart defects are not only the most common birth defect among newborns, CCHDs also account for nearly one-third of all infant deaths. And yet, there are still newborns being sent home from hospitals without these vital newborn screenings.

When these newborn screenings detect that a baby might have hearing loss or a life-threatening CCHD, it's possible to get them important medical interventions right away. For CCHD, it can be a matter of life or death that could otherwise be missed if a newborn wasn't screened for any of those 12 possible heart structure defects. A 2015 study in Pediatrics estimated that as many as 875 newborns leave hospitals without being screened for CCHD each year, simply because they don't show symptoms that would prompt such a screening.

And it's not like tests for CCHD are terribly complicated or even costly, either: Testing for CCHD requires the use of a pulse oximeter, a device that wraps around a baby's foot and causes zero pain. The cost to administer a newborn pulse oximetry screening is just $10 to $15 per infant, according to a 2014 survey in Public Health Reports.

Jimmy Kimmel's story about the birth of his son back in May helped bring the issue of congenital heart disease detected at birth into the national spotlight. While Kimmel used his late night talk show platform to advocate for the Affordable Care Act at the time, his reasoning still holds true. As the CDC report noted, state laws or policies about CCHD screening for newborns exist in 48 states as of 2016, and yet no state currently receives federal funding to offset the ostensibly low cost of CCHD screenings.

To help make the case for federal funding for CCHD screenings, the CDC report points to the success of federally funded early hearing detection and intervention (EHDI) programs that use a "1-3-6" model of detection and followup, with screenings at less than 1 month, diagnosis by 3 months, and early intervention by 6 months of age. As CCHD screenings aren't necessarily routine for every newborn, the agency recommends that the Department of Health and Human Services could use the EHDI funding model as a way to make sure that no child leaves a hospital without being testing for CCHD.