CHF supports advocacy in the area of CHD screenings. Many CHD cases are missed prenatally, at birth, or even in the infant stage. The actual number of cases undiagnosed before or after the first year is unknown as data on incidence of CHD is tracked only during the first year.
CHF’s screening goal is to avoid preventable mortality, significant developmental delay, physical disabilities related to brain injury and learning disabilities.
- Encourage development of national and state policies for CHD screening
- Raise awareness of signs and symptoms of CHD
- Raise awareness of lives lost due to missed diagnoses
Newborn Screening Panel recommended to include screening for severe congenital heart defects.
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 click here.
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.