Data and Statistics

At a glance

  • Heart defects are the most common types of birth defects.
  • Babies born with these conditions are living longer and healthier lives. Data show improved survival over time.
  • Medical care for heart defects can be costly.
Doctor listening to heart

Prevalence

Babies born with heart defects

Baby with a stethoscope listening to the heart
Heart defects are common

CHDs affect nearly 1% of―or about 40,000―births per year in the United States.12

The prevalence of some heart defects, especially mild types, are increasing. The prevalence of other types has remained stable. The most common type of heart defect is a ventricular septal defect.34

About 1 in 4 babies with a heart defect have a critical heart defect. 5Infants with critical heart defects generally need surgery or other procedures in their first year of life.

The prevalence of all types of CHDs, including critical heart defects, varies by state and by type of defect.6

Note: Prevalence refers to the number of babies born with heart defect compared to the total number of births.

Children and adults living with heart defects

Several methods have been used to estimate the total number of children and adults with heart defects in the United States.

To date, CDC researchers have found that

  • In 2010, about 1 million children and 1.4 million adults were living with a heart defect.7
  • In 2010, 1 in 250 to 1 in 59 children and teens were living with a heart defect.8

In addition, between 2011 and 2013, 1 in 157 children ages 1-10 years and 1 in 680 adolescents and adults ages 11-64 years had a heart defect noted in their health record at a medical visit.9

Heart defect-related deaths

Heart defects are a leading cause of birth defect-associated infant illness and death.5

Infant deaths due to heart defects often occur when the baby is younger than 28 days old. The first 28 days of life is sometimes called the neonatal period. In a study of neonatal deaths, 4.2% of all neonatal deaths were due to a heart defect.10

During 1999–2017, about 1 in every 814 deaths were attributable to heart defects in the United States. Nearly half (48%) of the deaths due to heart defects occurred during infancy (younger than 1 year of age).11

Survival

Survival of infants with heart defects depends on5

  • Severity of the defect
  • Timing of diagnosis
  • Treatments
  • Presence of other conditions

One-year survival:5

  • About 97% for babies born with a non-critical heart defect
  • About 75% for babies born with a critical heart defect

Survival and medical care for babies with critical CHDs are improving. One-year survival for infants with critical heart defects improved from about 67% during 1979-1993 to about 83% during 1994-2005.5

  • About 95% of babies born with a non-critical heart defect are expected to survive to at least 18 years of age.5
  • About 69% of babies born with a critical heart defect are expected to survive to at least 18 years of age.5

  • About 81% of babies born with critical or non-critical heart defects are expected to survive to at least 35 years of age.12
  • After the first year of life, about 93% of one-year-olds with a heart defect are expected to survive to at least 35 years of age.12

Survival to young adulthood is still lower for people with heart defects than the general population. The complexity of their defect, presence of other birth defects and birthweight might impact their survival to young adulthood. In addition, CDC researchers found that a mother's race and ethnicity might have contributed to survival. Therefore, factors such as access to care, systemic racism, and implicit bias may contribute to survival to young adulthood.

Illness and disability

  • Compared to children without a heart condition, children with a heart condition were more likely to have special healthcare needs, including medication needs, physical or speech therapy, and treatment for developmental or behavioral problems. Nearly 60% of children with a current heart condition have special healthcare needs, compared to 20% of children without a heart condition.13
  • Children and teens with heart defects more commonly have other birth defects, problems with breathing, mental health issues, and other heart problems. Teens with more severe types of heart defects are more likely to be admitted to the hospital for care.8
  • Children with CHD are about 50% more likely to receive special education services compared to children without birth defects.14
  • The occurrence and severity of a developmental disability or delay increases with how complex the heart defect is. For example, more than 80% of individuals with a mild CHD have no developmental disabilities. However, more than half of those with a more critical type of CHD have some form of disability or impairment.
Keep Reading: CHD: Needs of Children and Young Adults

  • Adults living with heart defects may be more likely than the general population to report additional cardiovascular issues such as heart failure and stroke.15
  • Adults with heart defects are more likely to have a disability than adults without heart defects. About 4 in every 10 adults with a CHD have a disability, with cognitive disabilities (trouble concentrating, remembering, or making decisions) being the most common type.16

Cost

In 2019, hospital costs for individuals living with heart defects in the United States exceeded $9.8 billion.17

In addition to medical costs to care for heart defects, families of children with heart defects can face costs, such as:18

  • High out-of-pocket expenses
  • Financial problems
  • Greater care-giving hours
  • Quitting or reducing hours at work to care for their child
  • Decreased mental health
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Content Source:
National Center on Birth Defects and Developmental Disabilities (NCBDDD)
  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 Pediatr. 2008;153:807-13.
  3. Botto LD, Correa A, Erickson D. Racial and temporal variations in the prevalence of heart defects. Pediatrics. 2001;107(3):e32.
  4. Bjornard K, Riehle-Colarusso T, Gilboa SM, Correa A. Patterns in the prevalence of congenital heart defects, metropolitan Atlanta, 1978 to 2005. Birth Defects Res Part A Clin Mol Teratol. 2013;97(2):87-94.
  5. Oster ME, Lee KA, Honein MA, Riehle-Colarusso T, Shin M, Correa A. Temporal trends in survival among infants with critical congenital heart defects. Pediatrics. 2013 May 1;131(5):e1502-8.
  6. Mai CT, Riehle-Colarusso T, O'Halloran A, Cragan JD, Olney RS, Lin A, Feldkamp M, Botto LD, Rickard R, Anderka M, Ethen M. Selected birth defects data from population-based birth defects surveillance programs in the United States, 2005–2009: Featuring critical congenital heart defects targeted for pulse oximetry screening. Birth Defects esearch. 2012 Dec;94(12):970.
  7. 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 Jul 12;134(2):101-9.
  8. Lui GK, McGarry C, Bhatt A, Book W, Riehle-Colarusso TJ, Dunn JE, Glidewell J, Gurvitz M, Hoffman T, Hogue CJ, Hsu D. Surveillance of congenital heart defects among adolescents at three US sites. The American journal of cardiology. 2019 Jul 1;124(1):137-43.
  9. Glidewell MJ, Farr SL, Book WM, Botto L, Li JS, Soim AS, Downing KF, Riehle-Colarusso T, D'Ottavio AA, Feldkamp ML, Khanna AD. Individuals aged 1-64 years with documented congenital heart defects at healthcare encounters, five US surveillance sites, 2011-2013. American heart journal. 2021 Aug 1;238:100-8.
  10. Petrini JR, Broussard CS, Gilboa SM, Lee KA, Oster M, Honein MA. Racial differences by gestational age in neonatal deaths attributable to congenital heart defects-United States, 2003-2006. Morbidity and Mortality Weekly Report. 2010;59(37):1208-11.
  11. Lopez KN, Morris SA, Tejtel KS, Espaillat A, Salemi JL. US Mortality Attributable to Congenital Heart Disease Across the Lifespan From 1999 Through 2017 Exposes Persistent Racial/Ethnic Disparities. Circulation. 2020;142:1132-47. https://doi.org/10.1161/CIRCULATIONAHA.120.046822
  12. Downing KF, Nembhard WN, Rose CE, Andrews JG, Goudie A, Klewer SE, Oster ME, Farr SL. Survival From Birth Until Young Adulthood Among Individuals With Congenital Heart Defects: CH STRONG. Circulation. 2023 Aug 15;148(7):575-88.
  13. Chen M, Riehle-Colarusso T, Yeung LF, Smith C, Farr SL. Children with Heart Conditions and Their Special Health Care Needs — United States, 2016. MMWR Morb Mortal Wkly Rep 2018;67:1045–1049.
  14. Riehle-Colarusso T, Autry A, Razzaghi H Boyle CA, Mahle WT, Van Naarden Braun K, Correa A. Congenital heart defects and receipt of special education services. Pediatrics. 2015; 136(3):496-504.
  15. Oster ME, Riser AP, Andrews JG, et al. Comorbidities Among Young Adults with Congenital Heart Defects: Results from the Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG — Arizona, Arkansas, and Metropolitan Atlanta, 2016–2019. MMWR Morb Mortal Wkly Rep 2021;70:197–201.
  16. Downing KF, Oster ME, Klewer SE, Rose CE, Nembhard WN, Andrews JG, Farr SL. Disability Among Young Adults With Congenital Heart Defects: Congenital Heart Survey to Recognize Outcomes, Needs, and Well-Being 2016-2019. J Am Heart Assoc. 2021 Nov 2;10(21):e022440.
  17. Swanson J, Ailes EC, Cragan JD, et al. Inpatient Hospitalization Costs Associated with Birth Defects Among Persons Aged <65 Years — United States, 2019. MMWR Morb Mortal Wkly Rep 2023;72:739–745.
  18. McClung N, Glidewell J, Farr SL. Financial burdens and mental health needs in families of children with congenital heart disease. Congenital heart disease. 2018 Jul;13(4):554-62.