People with congenital heart defects (CHD) are now living longer, healthier lives. Read about one man’s story of living with a CHD.
Ken 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 and to invite you to read other stories written by persons affected by CHDs on CDC's Living with Congenital Heart Defects webpage.
CDC's Effort to Study Congenital Heart Defects across the Lifespan
As medical care and treatment have advanced, babies with CHDs are living longer and healthier lives. Although this is remarkable progress, it presents new challenges for families and the healthcare system to meet the special health needs of these individuals.
CDC has received congressional funding to enhance and expand public health tracking of people with CHDs across the lifespan. These activities will help us better understand the survival, healthcare use, and longer-term outcomes of children, adolescents, and adults living with CHDs.
- CDC worked with three sites from 2012-2015 to pilot population-based tracking of adolescents and adults with CHDs. Population-based means tracking everyone affected by CHDs in a defined area, which helps us better understand the scope of those affected. For this project, the three sites were Emory University, Massachusetts Department of Public Health, and the New York State Department of Health. Each site collected data similarly so it can be grouped and analyzed together. Researchers are analyzing the data to better understand health needs of adolescents and adults with CHDs.
- In 2015, CDC expanded the previous project to five sites: Emory University, Duke University, University of Colorado - Denver, New York State Department of Health, and the University of Utah. Two sites, Emory University and New York State Department of Health, will build on the activities they did during the 2012-2015 project. The remaining sites will develop innovative approaches for population-based tracking of children, adolescents and adults with CHDs.
- CDC is working on another project called CHSTRONG, which is a survey that will collect information on healthcare use, barriers to care, and quality of life for adult survivors of CHDs. Along with the CDC and March of Dimes, the University of Arkansas for Medical Sciences and The University of Arizona College of Medicine will begin collecting data in 2016.
These activities can provide important insights to guide our continued efforts to prevent CHDs and support families affected by them.