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Data & Statistics

In the United States

At Birth
  • Congenital heart defects are the most common type of birth defect in the United States, affecting nearly 1% of―or about 40,000―births per year.1,2

  • The prevalence of some congenital heart defects, especially mild types, is increasing, while the prevalence of other types has remained stable. The most common type of heart defect is ventricular septal defect. [Read article]

Among Children and Adults
  • Currently, no population-based tracking program exists to collect data on children and adults with congenital hearts defects. Therefore, other methods have been used to estimate the number of people with these defects among this growing population.

    • One study estimated that, in 2002, there were 650,000 to 1.3 million adults living with a congenital heart defect. To estimate this, researchers used prevalence at birth and estimated the number of individuals expected to survive, with and without treatment. [Read summary]

    • Another study estimated that, in 2000, about 850,000 adults were living with a congenital heart defect, with about 80,000 of these individuals living with a severe heart defect. To obtain this estimate, researchers used data from administrative health care databases in an area where health care was universal. [Read article]

  • Based on those studies, there likely are nearly 1 million adults in the United States living with a congenital heart defect.

Congenital Heart Defect-Related Deaths

  • Congenital heart defects are a leading cause of birth defect-associated infant illness and death. [Read article]

  • During the period 1999–2006, there were 41,494 deaths related to congenital heart defects in the United States. This means that, for those deaths, while congenital heart defects might not have been the main cause of death, they did contribute to death in some way. During this time period, congenital heart defects were listed as the main cause of death for 27,960 people. Nearly half (48%) of the deaths due to congenital heart defects occurred during infancy (younger than 1 year of age). [Read article]

Illness and Disability

  • At least 15% of congenital heart defects are associated with genetic conditions.3,4
  • About 20% to 30% of people with a congenital heart defect have other physical problems or developmental or cognitive disorders.5,6,7

Health Care Costs

  • Data on hospitalizations for individuals with congenital heart defects in the United States in 2004 were about $1.4 billion, and severe congenital heart defects accounted for about $511 million, or about 37%, of the hospital costs associated with congenital heart defects.8

  • In 2005, for a privately insured population in the Unites States, estimated medical care costs for an infant with any congenital heart defect was nearly $100,000, and costs were higher for those infants with a severe congenital heart defect.9

References

  1. Hoffman JL, Kaplan S. The incidence of congenital heart disease. J Am Coll Cardiol. 2002;39(12):1890-1900.
  2. Reller MD, Strickland MJ, Riehle-Colarusso T, Mahle WT, Correa A. Prevalence of congenital heart defects in Atlanta, 1998-2005. J Pediatrics 2008;153:807-813.
  3. Oyen N, Poulsen G, Boyd HA, Wohlfahrt J, Jensen PKA, Melbye M. Recurrence of Congenital Heart Defects in Families. Circulations 2009;120;295-301.
  4. Hartman RJ, Rasmussen SA, Botto LD, Riehle-Colarusso T, Martin CL, Cragan JD, Shin M, Correa A. The Contribution of Chromosomal Abnormalities to Congenital Heart Defects: A Population-Based Study. Pediatr Cardiol. 2011 [Epub ahead of print].
  5. Miller A, Riehle-Colarusso T, Alverson CJ, Frias JL, Correa A. Congenital Heart Defects and Major Structural Noncardiac Anomalies, Atlanta, Georgia, 1968-2005. J Pediatr. 2011;159:70-8.
  6. Limperopoulos C, Majnemer A, Shevell MI, Rosenblatt B, Rohlicek C, Tchervenkov C. Neurodevelopmental Status of Newborns and Infants with Congenital Heart Defects Before and After Open Heart Surgery. J Pediatr. 2000;137:638-45.
  7. Shillingford AJ, Glanzman MM, Ittenbach RF, Clancy RR, Gaynor JW, Wernovsky G. Inattention, Hyperactivity, and School Performance in a Population of School-Age Children with Complex Congenital Heart Disease. Pediatrics. 2008;121:e759-67.
  8. Russo CA, Elixhauser A. Hospitalizations for Birth Defects, 2004. HCUP Statistical Brief #24. 2007. Rockville, MD, U.S. Agency for Healthcare Research and Quality.
  9. Boulet SL, Grosse SD, Riehle-Colarusso T, & Correa-Villasenor A. (2010) Health Care Costs of Congenital Heart Defects. In DF Wyszynski, A Correa-Villasenor, & TP Graham (Eds.), Congenital Heart Defects: From Origin to Treatment (p493-501). New York: Oxford University Press, Inc.

 

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    National Center on Birth Defects and Developmental Disabilities

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