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Living with a Heart Defect: One Family's Story

Congenital heart defects are conditions that are present at birth and can affect the structure of a baby's heart and the way it works. They are the most common type of birth defect. As medical care and treatment have advanced, infants with congenital heart defects are living longer and healthier lives. Many now are living into adulthood.

Photo: Nick had three difficult open heart surgeries

Living with a Congenital Heart Defect: One Family's Story

As Susan May welcomed the birth of her son Nick, she thought everything seemed normal. However, as she asked, "Is my baby fine?" the initial smiles surrounding her quickly changed to whispers and concerned looks. Susan did not realize then that the adventure had only begun as tests soon revealed that her baby had a congenital heart defect.

After Nick had three difficult open heart surgeries, his doctors decided that he could survive only with a heart transplant. Just before his second birthday, Nick received his new heart. Although Nick is 21 years old now and doing well, he and his parents still worry about transplant rejection and the future. "I think about the pain and frustration we have been through, and my hope for other families is that we can find out what causes congenital heart defects so that we can prevent them," added Susan.

Tracking and Research

Accurately tracking congenital heart defects is the first step in preventing them and reducing their effect. Information from tracking systems provides a basis for research. In addition, research helps the CDC's National Center on Birth Defects and Developmental Disabilities (NCBDDD) answer critical questions about the causes of and opportunities for preventing congenital heart defects.

Following is a summary of our congenital heart defects tracking and research work.

Photo: Pregnant woman

Tracking Congenital Heart Defects

Birth defects tracking systems are vital for finding birth defects, including congenital heart defects. NCBDDD uses different systems to look for changes and then tells the public about the trends we discover. One type of system―population-based tracking systems―help researchers look at all of the people with a certain condition or disease who live in a specific area. This is done so that researchers can better understand what is happening among this population.

Many states include congenital heart defects in their birth defects tracking efforts among infants. However, at this time, no population-based tracking program exists to collect data on children, adolescents, and adults with congenital hearts defects. Tracking where and when heart defects occur and who they affect gives us important clues about preventing them and allows us to evaluate our efforts. By studying the data collected, we can identify factors that increase or decrease the risk of congenital heart defects and identify community or environmental concerns that need more study.

Researching Causes of and Risk Factors for Congenital Heart Defects

The causes of congenital heart defects among most babies are unknown. Some babies have heart defects because of changes in their genes or chromosomes. Congenital heart defects also are thought to be caused by a combination of genes and other risk factors, such as things the mother comes into contact with in the environment or what the mother eats or drinks or certain medicines the mother uses.

Just like the many families affected by congenital heart defects, we at NCBDDD want to find out what causes them. Understanding the risk factors that can increase the chance of having a baby with a congenital heart defect will help us learn more about the causes. Research is ongoing to identify potential factors associated with the occurrence of congenital heart defects.

Future Opportunities to Understand and Prevent Congenital Heart Defects

As medical care and treatment have advanced, infants with congenital heart defects are living longer and healthier lives. Many are now living into adulthood. Although this is remarkable progress, it presents new challenges to families and the health care system to meet the special health needs of these individuals. And yet, currently no population-based tracking system exists to look at this growing population of children, adolescents, and adults with congenital heart defects.

Following are some of the future opportunities for tracking and research of congenital heart defects:

  • Improving tracking systems to include a more diverse population of births would help us better understand if congenital heart defects are increasing, decreasing, or staying the same and help identify potential causes.
  • Developing plans to conduct population-based tracking of adults with congenital heart defects could help us learn more about this growing population of affected individuals.
  • Exploring approaches to decrease the number of women with uncontrolled diabetes during pregnancy could help prevent congenital heart defects, as well as other major birth defects.
  • Evaluating long-term outcomes, health care costs, and quality of life will help identify opportunities that will support the health and wellness of children, adolescents, and adults affected by congenital heart defects.

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