Saving Little Hearts

Federal Recommendation Regarding CHD Screening of Newborns

In a ground-breaking recommendation, The Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC), a government agency reporting to Health and Human Services Secretary Sebelius, clearly stated that there is a need to screen newborns for the most severe and life-threatening type of congenital heart defects-critical congenital cyanotic heart disease. The committee recommended that screening for severe CHD be added to the traditional newborn screening panel, however, noted that additional work needs to be done in a timely manner. These acknowledged efforts involve The National Institutes of Health (NIH) to conduct research to look at the entire screening process; The Centers for Disease Control and Prevention (CDC) to complete surveillance to look at outcomes; and, The Health Resources and Services Administration (HRSA) to begin looking at standards. There is also a recommendation for collaboration between public health and health care professional organizations and families to develop appropriate education and training materials. For complete text of the recommendations as presented by HRSA, please see below.

As part of the National Congenital Heart Coalition and the Congenital Heart Public Health Consortium, we look forward to partnering with the public health agencies and health care professionals as the details of this plan are sorted out. We will continue to provide you with updated and accurate information along the way.

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From the Health Resources & Services Administration (HRSA)/Maternal & Child Health Bureau re: Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC) recommendation to add critical congenital cyanotic heart disease (CCCHD) to the uniform newborn screening panel.

Although there are recognizable evidence gaps, there are compelling reasons for recommending screening newborns for critical congenital cyanotic heart disease (CCCHD). SACHDNC recommends the addition of screening for CCCHD to the recommended uniform screening panel with the understanding that the following activities will also take place in a timely manner: The National Institutes of Health shall fund research activities to determine the relationships among the screening technology, diagnostic processes, care provided, and the health outcomes of affected newborns with CCCHD as a result of prospective newborn screening; The Centers for Disease Control and Prevention shall fund surveillance activities to monitor disease link to infant mortality and other health outcomes; The Health Resources and Services Administration shall guide the development of screening standards and infrastructure needed for the implementation of a public health approach to point of service screening for CCCHD; The Health Resources and Services Administration shall fund the development of, in collaboration with public health and health care professional organizations and families, appropriate education and training materials for families and public health and health care professionals relevant to the screening and treatment of CCCHD.

*reprinted with permission from Mended Little Hearts. Saving Little Hearts and Mended Little Hearts work hand in hand to provide the best services possible to the congenital heart community.