Data and Statistics on Congenital Heart Defects
Congenital heart defects (CHDs) are the most common types of birth defects, and babies born with these conditions are living longer and healthier lives. Find more statistics about CHDs below.
Number of U.S. Babies Born with CHDs
- CHDs affect nearly 1% of―or about 40,000―births per year in the United States.1,2
- The prevalence (the number of babies born with heart defect compared to the total number of births) of some CHDs, especially mild types, is increasing, while the prevalence of other types has remained stable. The most common type of heart defect is a ventricular septal defect (VSD).3,4
- About 1 in 4 babies with a CHD have a critical CHD. Infants with critical CHDs generally need surgery or other procedures in their first year of life. [Read summaryexternal icon]
- The prevalence of all types of CHDs, including critical CHDs, varies by state and by type of defect. [Read summaryexternal icon]
CDC is working with the University of Arizona, Duke University, Emory University, the New York State Department of Health, the South Carolina Department of Health and Environmental Control, the University of Utah, and the University of Iowa to track individuals with CHDs across the lifespan. Understanding health issues and needs across the lifespan is vital to improving the lives of individuals born with these conditions. [Learn More]
Number of U.S. Children and Adults Living with CHDs
- Currently, there are a number of state-based birth defects programs that track CHDs among newborns and young children, but no tracking system exists to look at the growing population of older children and adults with heart defects.
- To date, other methods have been used to estimate the total number of children and adults with these defects. For example, one study estimated that, in 2010, over 2 million infants, children, adolescents, and adults were living with CHDs in the United States. Researchers estimated that about 1 million U.S. children and about 1.4 million U.S. adults were living with CHDs. Overall, there are slightly more adults living with CHDs than children. To obtain this estimate, researchers used data from administrative healthcare databases in Canada to estimate the prevalence of people living with CHDs and applied this to the U.S. Census data from 2010. [Read abstractexternal icon]
- CHDs are a leading cause of birth defect-associated infant illness and death. [Read articleexternal icon]
- Infant deaths due to CHDs often occur when the baby is less than 28 days old (sometimes called the neonatal period). In a study of neonatal deaths, 4.2% of all neonatal deaths were due to a CHD. [Read article]
- During 1999–2006, there were 41,494 deaths related to CHDs in the United States. This means that CHDs were either the main cause of death or contributed to death in some way. During this time period, CHDs were listed as the main cause of death for 27,960 people. Nearly half (48%) of the deaths due to CHDs occurred during infancy (younger than 1 year of age). [Read articleexternal icon]
- Survival of infants with CHDs depends on how severe the defect is, when it is diagnosed, and how it is treated. [Read summaryexternal icon]
- About 97% of babies born with a non-critical CHD are expected to survive to one year of age. About 95% of babies born with a non-critical CHD are expected to survive to 18 years of age. Thus, the population of people with CHDs is growing.
- About 75% of babies born with a critical CHD are expected to survive to one year of age. About 69% of babies born with critical CHDs are expected to survive to 18 years of age.
- Survival and medical care for babies with critical CHDs are improving. Between 1979 and 1993, about 67% of infants with critical CHDs survived to one year. Between 1994 and 2005, about 83% of infants with critical CHDs survived to one year.
Illness and Disability
- About 4 in every 10 adults with heart defects have a disability, with cognitive disabilities (trouble concentrating, remembering, or making decisions) being the most common type. [Read Summaryexternal icon] [Read key findings]
- At least 15% of CHDs are associated with genetic conditions.5,6
- About 20% to 30% of people with a CHD have other physical problems or developmental or cognitive disorders.7,8,9
- Children with CHD are about 50% more likely to receive special education services compared to children without birth defects.10
- 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. Guidelines for screening, diagnosing, and managing developmental disabilities or delay in children with CHDs have been developed. [Read summaryexternal icon]
- Parents of children with special healthcare needs with heart problems commonly report that their children’s condition prevents them from doing things other children do. Parents reported that these children experience more difficulty with learning, concentration, communication, self-care, and fine and gross motor skills than children with special healthcare needs without heart problems. These children also missed more days of school and participated less in extracurricular activities than children with special healthcare needs without heart problems11. [Read summaryexternal icon]
- 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 condition12. [Read summaryexternal icon]
- In the United States, hospital costs for the population of individuals with cardiovascular defects in 2013 were about $6.1 billion. Critical congenital heart defect–associated hospitalizations had the highest mean and median cost of the birth defect categories considered ($79,011 and $29,886, respectively). [Read summary pdf icon[265 KB / 6 pages]external icon]
- Pediatric hospitalizations with CHDs accounted for approximately $5.6 billion in hospital costs, representing 15.1% of costs for all pediatric hospitalizations in 2009. Hospitalizations with critical CHD accounted for 26.7% of all costs for CHD hospitalizations, with hypoplastic left heart syndrome, coarctation of the aorta, and tetralogy of Fallot having the highest total costs. [Read summaryexternal icon]
- In addition to the medical costs of care for CHDs, families of children with CHDs can face other costs, such as high out-of-pocket expenses, financial problems, greater care-giving hours, quitting or reducing hours at work in order to care for their child, and decreased mental health. [Read summaryexternal icon]
Children with Heart Conditions Have Special Healthcare Needs
A study from the Centers for Disease Control and Prevention (CDC) found that 1 in 77 U.S. children reportedly had a current heart condition in 2016.
(Published: September 27, 2018)
Study Finds Infant Cardiac Deaths Have Declined in States that Mandate Screening for Critical Congenital Heart Disease
The Journal of the American Medical Association has published a study reporting a more than 33% decline in infant deaths from critical congenital heart disease (CCHD) in eight states that mandated screening for CCHD using pulse oximetry compared to states without screening policies
(Published: December 5, 2017)
Estimating the Number of People with Congenital Heart Defects Living in the United States
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.
(Published: July 5, 2016)
Use of Special Education Services among Children with CHDs
CDC study findings in Pediatrics show that children with congenital heart defects (CHDs) received special education services more often than children without birth defects.
(Published: August 17, 2015)
Estimated Number of Infants Detected and Missed by Critical Congenital Heart Defect Screening
The journal Pediatrics has published a study estimating the number of infants with critical congenital heart defects(critical CHDs) potentially detected or missed through universal screening for critical CHDs using pulse oximetry.
(Published: May 11, 2015)
Diabetes before pregnancy and congenital heart defects
In a study published in the American Journal of Preventative Medicine, women with diabetes before pregnancy were about 4 times more likely to have a pregnancy affected by a congenital heart defect compared to women without diabetes.
(Published: February 2015)
Long Term Outcomes in Children with Congenital Heart Disease
In a study published in the Journal of Pediatrics, CDC researchers found that children with CHD are more likely to report worse health overall, to need more healthcare services, and to have other health conditions, compared to children without CHD.
(Published: January 2015)
Infant Death Due to Heart Defects
Congenital heart defects are conditions present at birth that can affect the way the heart works. They can cause lifelong disability or death. They are the most common type of birth defect, affecting nearly 40,000 births in the United States each year.
(Published: July 9, 2014)
- Hoffman JL, Kaplan S. The incidence of congenital heart disease. J Am Coll Cardiol. 2002;39(12):1890-1900.
- 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.
- Botto LD, Correa A, Erickson D. Racial and temporal variations in the prevalence of heart defects. Pediatrics. 2001;107(3):e32. [Read summaryexternal icon]
- 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. [Read summaryexternal icon]
- Oyen N, Poulsen G, Boyd HA, Wohlfahrt J, Jensen PKA, Melbye M. Recurrence of congenital heart defects in families. Circulation. 2009;120;295-301. [Read summaryexternal icon]
- 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;32(8):1147-57. [Read summaryexternal icon]
- 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. [Read summaryexternal icon]
- 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. [Read summaryexternal icon]
- 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. [Read summaryexternal icon]
- 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. [Read summaryexternal icon]
- Farr SL, Downing KF, Riehle-Colarusso T, Abarbanell G. Functional limitations and educational needs among children and adolescents with heart disease. Congenit Heart Dis. 2018; 13(4): 633-639.
- 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.
- 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.