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Congenital Heart Defects Across the Lifespan

Ken's Story

Photo: Ken WoodhouseKen was born in 1981 with tetralogy of Fallot, a severe birth defect that affects normal blood flow through the heart. When he was eight months old, Ken had open heart surgery to improve his condition. "Like many people with CHD, I thought that the surgery had fixed me, and I was lost to cardiology care as an adolescent," says Ken. During the period that he did not receive specific care for his CHD, Ken led a very active lifestyle through cycling. In 2005 he completed his first multi-day endurance ride of 180 miles. He has done other endurance rides of even greater distances since then.

In August 2011, Ken suffered a biking accident that brought him to the emergency room. "I was suddenly reminded that I am not completely fixed and that CHD is, in fact, a lifelong condition," said Ken. A cardiac MRI (magnetic resonance imaging) revealed an enlarged area in the main blood vessel leading from his heart to his lungs (main pulmonary artery), and Ken was able to seek the medical treatment he needed. After Ken's 2011 emergency room visit, he decided to learn more about his CHD, and he makes sure he keeps up with the lifelong cardiology care he needs.

CDC would like to thank Ken for sharing this personal story.

CDC's Effort to Study Congenital Heart Defects across the Lifespan

As medical care and treatment have advanced, people with CHDs are living longer and healthier lives. Most are now living into adulthood. Although this is remarkable progress, it presents new challenges to families and the healthcare system to meet the special health needs of these individuals. A number of population-based state birth defects tracking programs monitor CHDs among newborns and young children, but no population-based tracking system exists to look at this growing population of older children and adults with heart defects. A population-based tracking system is used by researchers to look at all of the people with a certain condition or disease (like a CHD) who live in a specific area. This is done so that researchers can better understand what is happening among this population.

In 2012, CDC received funding to enhance and expand public health tracking of CHDs across the lifespan. With this new funding, CDC is working on a project with the New York State Department of Health, Emory University in Atlanta, Georgia, and the Massachusetts Department of Public Health to develop population-based tracking of adolescents and adults with congenital heart defects. The objectives of these tracking activities are to better understand the survival, healthcare use, and long term outcomes of adolescents and adults affected by congenital heart defects. Understanding health issues and needs across the lifespan is vital to improving the lives of individuals born with these conditions.

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  • Page last updated: February 10, 2014 The U.S. Government's Official Web PortalDepartment of Health and Human Services
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