Many States Screen Newborns for CCHD, but Data Remain Spotty

In 43 states, legislators have enacted laws or regulations and hospitals have issued guidelines that support screening newborns for critical congenital heart defects (CCHD), but despite the legislation, low staffing and funding hamper data collection, according to a state-by-state assessment.

In a report published online June 19 in the Morbidity and Mortality Weekly Report, Jill Glidewell, MSN, from the National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia, and coauthors argue that such early cardiac screening, followed by additional tests and treatment, could reduce newborn disease and deaths.

CCHD, which occurs in roughly two of every 1000 live births, must be treated by surgery or catheterization by the infant's first birthday, according to Glidewell and colleagues. Without such early intervention, many newborns die shortly after birth; survivors are at risk for serious complications.

Clinicians identify at-risk newborns through pulse oximetry, a measure of blood oxygen saturation that, unlike most of the 32 health conditions tracked by newborn screening, does not rely on blood gathered from a heel stick. According to Glidewell and coauthors, Indiana, Maryland, and New Jersey were early adopters, enacting state legislation by mid-2011 that supported CCHD screening before federal recommendations endorsed by the secretary of the US Department of Health and Human Services in September 2011. The trio is among 43 states with legislation providing guidance on the matter.

"The increasing number of states mandating newborn screen¬ing for CCHD will likely increase the number of newborns screened, allowing for early identification and the potential for the prevention of morbidity and mortality," Glidewell and coauthors write.

Seven states and the District of Columbia support such newborn screening but have not mandated it. Data collection across the nation is a patchwork that varies widely: Some states collect no information, but 24 states currently collect data on CCHD screening.

"State-level data collection is vital for surveillance, monitor¬ing of outcomes, and evaluation of state CCHD newborn screening programs," the authors note. "Although all types of screening data can be valuable, individual-level data are important for surveillance and evaluation."

State-level legislation, the authors conclude, is not a panacea and must be backed up with investments in public health infrastructure and the technological wherewithal to collect and report data, which they call "vital to ensure a successful CCHD newborn screening program."

Morb Mortal Wkly Rep. 2015;64;625-630. Full text

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