Key Findings: Many U.S. Children and Teens Are Living With a Heart Defect

A study from the Centers for Disease Control and Prevention (CDC) found that, in 2010, 1 in 250 to 1 in 59 children and teens were living with a congenital heart defect in certain areas of the United States. This study highlights the importance of transitioning from pediatric to adult medical care with a heart doctor. Ongoing specialty care helps people with heart defects live as healthy a life as possible.

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Main Findings

• Based on information from hospitals, clinics, and health insurance records, researchers estimate that, in 2010, 1 in 250 to 1 in 59 children and teens were living with a heart defect in certain areas of the United States.
  • The estimated number of children and teens with a heart defect differed based on the source of information and the state or county where researchers collected data.

• Almost all teens with a heart defect had at least one outpatient hospital visit, meaning they received medical treatment without being admitted to the hospital. Teens with more severe types of heart defects were most likely to be admitted to the hospital for care.
• Children and teens with a heart defect may be more likely to also have other birth defects, problems with breathing, mental health issues, and other heart problems.
• It is important for those living with a heart defect to talk with a heart doctor regularly. Ongoing specialty medical care helps people with heart defects live as healthy a life as possible.

About This Study

• This is one of the first studies to look at the number of children and teens (aged 11–19 years) living with heart defects in the United States.
  • Information for this study came from a larger projectexternal icon which estimated that more than 73,000 people (aged 11-64 years) were living with a heart defect in certain areas of the United States in 2010.

• Researchers looked at individuals who were living in certain counties in Georgia and New York and statewide in Massachusetts in 2010.
  • Researchers collected information about study participants from hospital, clinic, and health insurance records to look at how common heart defects were and at the types of services and care they received.
  • Study participants had a heart defect noted in their medical record between 2008 and 2010; however, researchers weren’t sure if all heart conditions were present at birth.

 About Congenital Heart Defects

Congenital heart defects are conditions that are present at birth that can affect the structure of a baby’s heart and its ability to work properly. Heart defects affect 1 in 110 babies and are the most common type of birth defect. As medical care and treatment have improved, many children born with heart defects are now living longer and into adulthood.

Our Work

CDC’s National Center on Birth Defects and Developmental Disabilities (NCBDDD) is tracking the number of people living with heart defects to learn about their long-term health, medical costs, and quality of life. This information can help identify opportunities to support the health and wellness of all people living with heart defects.

More Information

• Basics About Congenital Heart Defects
• Living with a Congenital Heart Defect
• Facts About Birth Defects

Key Findings Reference

Lui GK, McGarry C, Bhatt A, Book W, Riehle-Colarusso TJ, et al. Population-based Surveillance of Congenital Heart Defects among Adolescents at Three Sites in the United States (in press). The American Journal of Cardiology; 2019.

Glidewell J, Book W, Raskind-Hood C, Hogue C, Dunn JE, Gurvitz M, et al. Population-based Surveillance of Congenital Heart Defects among Adolescents and Adults: Surveillance Methodology. Birth Defects Research. 2018; 110: 1395– 1403.