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Key Findings: Newborn Screening for Critical Congenital Heart Defects Now Common Throughout United States

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Photo of doctor listening to newborn baby's heart with a stethoscope

Screening for critical congenital heart defects (critical CHD) is common throughout the U.S. In a new report, CDC researchers and partners reviewed the overall effects of critical CHD screening and lessons learned from it. Read More

In 2011, newborn screening for critical congenital heart defects (critical CHDs) was added to the United States Recommended Uniform Screening Panel. By 2015, 46 states and Washington, D.C. included critical CHDs in their newborn screening programs. In a new report in the journal, Pediatrics, CDC researchers and partners reviewed the overall effects of critical CHD screening, including costs and health outcomes (cost-effectiveness) of performing screenings, challenges at the state level for screening, and implementing screening in special settings. You can read the abstract here.

Main Findings

  • Critical CHD screening is now done in nearly every state.
  • Before 2011, it had not been clearly defined which of the critical CHDs should be included in newborn screening. Now, all 12 of the most common types of critical CHDs, as well as some of the other less common critical CHDs are included for screening.
  • Critical CHD screening can improve the lives of children by detecting a critical CHD before a baby shows symptoms. See the table below for a list of conditions that are detected using critical CHD screening.
  • Critical CHD screening also helps detect conditions other than critical CHDs that may not otherwise have been identified, such as an infection. Identification of conditions other than critical CHDs increases the public health impact of critical CHD screening.
  • Improvements in critical CHD screening guidelines and implementation are needed, especially for neonatal intensive care units, babies born outside of hospitals, and regions of the country at high altitude. Babies born at higher altitude typically have lower levels of oxygen in their blood than babies born at sea level, so screening protocols may be different in areas at higher altitude than in areas at sea level.

Conditions detected from newborn screening for critical CHDs using pulse oximetry

About this Report

Photo of newborn baby's foot during a pulse oximetry screening
  • In 2011, the Secretary of Health and Human Services recommended that critical CHDs be added to the U.S. Recommended Uniform Screening Panel for newborns. This new report in the journal, Pediatrics, looked at the overall effectiveness of adding critical CHDs to newborn screening, including
    • Identifying the types of critical CHDs for screening,
    • Discussing state-level challenges to implementing the screening of all babies in the state, and tracking babies identified with critical CHDs,
    • Performing screening using the proper equipment and in a cost-effective manner, and
    • Implementing screening in special settings such as in the neonatal intensive care unit, within out-of-hospital settings, and in areas at high altitude.

Heart Defects: CDC’s Activities

The Centers for Disease Control and Prevention (CDC) works to identify causes of CHDs and ways to prevent them. We do this through:

  1. Surveillance or disease tracking:
    1. CDC funds and coordinates the Metropolitan Atlanta Congenital Defects Program (MACDP).  CDC also funds population-based state tracking programs. Birth defects tracking systems are vital to help us find out where and when birth defects occur and whom they affect.
    2. CDC funds projects to track CHDs across the lifespan in order to learn about health issues and needs among all age groups.
    3. CDC, in partnership with March of Dimes, surveys adults with CHDs to assess their health, social and educational status, and quality of life. The survey is called CH STRONG, Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG.
  2. Research: CDC funds the Centers for Birth Defects Research and Prevention, which collaborate on large studies such as the National Birth Defects Prevention Study (NBDPS) (births 1997-2011) and the Birth Defects Study To Evaluate Pregnancy exposureS (BD-STEPS) (began with births in 2014). These studies are working to identify factors that put babies at risk for birth defects, including heart defects.
  3. Collaboration:
    1. CDC is assessing states’ needs for help with CCHD screening and reporting of screening results. CDC helps states and hospitals better understand the cost and impact of CCHD screening.   CDC also promotes collaboration between birth defects tracking programs and newborn screening programs to improve understanding of the effectiveness of CCHD screening.
    2. CDC provides technical assistance to the Congenital Heart Public Health Consortium (CHPHC). The CHPHC is a group of organizations uniting resources and efforts in public health activities to prevent congenital heart defects and improve outcomes for affected children and adults. Their website provides resources for families and providers on CHDs.

More Information

To learn more about congenital heart defects, please visit https://www.cdc.gov/heartdefects/.

To learn more about newborn screening for critical congenital heart defects, please visit https://www.cdc.gov/ncbddd/heartdefects/cchd-facts.html and https://www.cdc.gov/ncbddd/heartdefects/screening.html.

To learn more about the potential impact and the costs and health outcomes (cost-effectiveness) of newborn screening for critical congenital heart defects, please visit: https://www.cdc.gov/ncbddd/heartdefects/features/keyfindings-cost-screening-cchd.html.

References

Oster ME, Aucott SW, Glidewell J, Hackell J, Kochilas L, Martin GR, Phillippi J, Pinto NM, Saarinen A, Sontag M, Kemper AR. Lessons Learned from Newborn Screening for Critical Congenital Heart Defects. Pediatrics. 2016. [epub ahead of print].

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