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Key Findings: Estimating the Number of People with Congenital Heart Defects Living in the United States

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The journal Circulation has published a study that estimates about 1 million children and 1.4 million adults in the United States were living with a congenital heart defect (CHD) in 2010. These estimates can help policymakers and healthcare systems plan to meet the health needs of the growing population of adults with CHDs. Read the scientific summary of the paper.

What Did We Already Know?

In 2000, it was estimated that about 790,000 adults were living with a CHD in the United States.1 Advances in medical and surgical treatment of CHDs have helped more people with CHDs live longer2; therefore, the population of adults with a CHD was expected to grow.

What Does This Study Add?

In this CDC study, researchers used estimates of the number of adults and children living with a CHD in Québec, Canada, as well as estimates of race- and age-specific mortality in the United States to come up with an estimate of about 1 million children and 1.4 million adults living with a CHD in the United States as of 2010. These findings highlight the importance of understanding how the population of children and adults with CHDs is changing in the United States and how to better plan for the healthcare needs of people living with CHDs.

What Were This Study’s Main Findings?

  • Approximately 2.4 million people were estimated to be living with a CHD in the United States in 2010. About 1 million of those were children under the age of 18 years and about 1.4 million were adults age 18 years and older.
    • About 12% (289,000 people) were estimated to have a severe CHD.
  • There were slightly more women (1,260,000) than men (1,163,000) living with a CHD in the United States.

About This Study

  • The aim of this study was to estimate the number of children and adults living with a CHD in the United States in 2010.
  • Currently, the United States does not track adults and older children with CHDs. In Québec, Canada, all individuals are assigned a unique identifying number for medical diagnoses and treatment, allowing researchers to estimate the number of adults living with a CHD in Québec.3 These estimates were applied to data from the United States in order to get U.S. estimates of children and adults living with a CHD.
  • The results of this study should not be interpreted as absolute numbers, but rather as a range of possible estimates. For example, about 1,444,000 adults were estimated to be living with a CHD in the United States, but when accounting for uncertainty, the actual estimate is likely between 1,430,000 and 1,458,000 adults.

What are congenital heart defects?

Congenital heart defects are the most common type of birth defect in the United States, affecting nearly 1% (about 40,000) of births per year.1 CHDs are present at birth and they affect the structure of a baby’s heart and the way it works. About 1 in 4 babies born with a heart defect has a critical CHD.4 Babies with a critical CHD need surgery or other procedures within the first year of life.

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/ncbddd/heartdefects/index.html.

References

Gilboa SM, Devine OJ, Kucik JE, Oster ME, Riehle-Colarusso T, Nembhard WN, Xu P, Correa A, Jenkins K, Marelli AJ. Congenital heart defects in the United States – Estimating the magnitude of the affected population in 2010. Circulation. 2016 [epub ahead of print].

Additional References
  1. Warnes CA, Liberthson R, Danielson GK, Dore A, Harris L, Hoffman JI, Somerville J, Williams RG, Webb GD. Task Force 1: The changing profile of congenital heart disease in adult life. J Am Coll Cardiol. 2001; 37:1170-1175.
  2. Oster M, Lee K, Honein M, Colarusso T, Shin M, Correa A. Temporal trends in survival for infants with critical congenital heart defects. Pediatrics. 2013; 131:e1502-e1508.
  3. Marelli AJ, Ionescu-Ittu R, Mackie AS, Guo L, Dendukuri N, Kaouache M. Lifetime prevalence of congenital heart disease in the general population from 2000 to 2010. Circulation. 2014; 130:749-756.
  4. Reller MD, Strickland MJ, Riehle-Colarusso T, Mahle WT, Correa A. Prevalence of congenital heart defects in metropolitan Atlanta, 1998-2005. J Pediatr. 2008;153(6):807–813.

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