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Key Findings: Mortality Resulting From Congenital Heart Disease Among Children and Adults in the United States, 1999-2006

Photo: A fence with a heart shape cut out

The American Heart Association’s journal Circulation has published a new Centers for Disease Control and Prevention study entitled “Mortality Resulting From Congenital Heart Disease Among Children and Adults in the United States, 1999-2006”. You can read the article here. Following is a summary of the findings from this article.

About Congenital Heart Defects and This Study

Congenital heart defects are conditions present at birth that can affect the way the heart works. They are the most common type of birth defect, affecting nearly 40,000 births in the United States each year. They also are a major cause of lifelong disability and infant death. However, much less is known about the rate of death (also called mortality) due to congenital heart defects among adults or trends in the rate of death due to congenital heart defects over time.

This CDC study highlights that congenital heart defects are lifelong conditions that can require special attention throughout a person’s lifespan. For this study, researchers looked at data from death certificates for residents of the United States for the period 1999–2006. Researchers looked at trends in death due to congenital heart defects by age at death, race and ethnicity, and sex.

Important Findings From This Study

  • 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, congenital heart defects might not have been the main cause of death, but they did contribute to death in some way.
  • During the period 1999–2006, congenital heart defects were listed as the main cause of death for 27,960 deaths.
    • Nearly half (48%) of the deaths due to congenital heart defects occurred during infancy (younger than 1 year of age).
    • Non-Hispanic Blacks were more likely to die from congenital heart defects than were non-Hispanic Whites.
    • Males were more likely to die from congenital heart defects than females.
  • During this time period, deaths due to congenital heart defects declined among children and adults, but differences between racial and ethnic groups persisted.
  • The median age at death for all congenital heart defects was 1 year of age.

As people with congenital heart defects are living longer, the provision and use of appropriate medical care into adulthood is very important. The information from this study can be used to help plan and evaluate interventions to help children and adults get the care they need to stay healthy. The results of this study and future studies have and will help us monitor death rates due to congenital heart defects among children and adults and to understand if it is increasing or decreasing.

Congenital Heart Defects: CDC Activities

CDC works to identify causes and prevention opportunities for congenital heart defects by applying a public health approach:

  • Surveillance or disease tracking: Tracking where and when congenital heart defects occur and who they affect gives important clues about opportunities for prevention.
  • Research: CDC coordinates the National Birth Defects Prevention Study, which is the largest population-based effort in the United States to identify the causes of birth defects. Population-based means that the researchers look at all babies with birth defects who live in the study regions. This study has identified some important risk factors for congenital heart defects. For example, women who are obese when they become pregnant are more likely to have a baby with a congenital heart defect.
  • Prevention: Studying the occurrence of congenital heart defects among the U.S. population holds promise for identifying risk factors that potentially could be modified or eliminated, thus helping to prevent the future occurrence of congenital heart defects.
  • Collaboration: CDC provides technical assistance to the Congenital Heart Public Health Consortium, a unique collaboration that brings together families affected by congenital heart defects, experts in the field, and support organizations to address issues related to congenital heart defects.

To learn more about congenital heart defects, please visit CDC’s birth defects webpage.


Gilboa SM, Salemi JL, Nembhard WN, Fixler DE, and Correa A. Mortality Resulting From Congenital Heart Disease Among Children and Adults in the United States, 1999-2006. Circulation. 2010 Nov 22. [Epub ahead of print]