Heart Defect Care for Life

February 7-14, 2015 is Congenital Heart Defect Awareness Week. Did you know that about 2 million people live with a congenital heart defect (CHD) in the United States? Many people with a CHD are not cured, even if their CHD has been repaired. If you were born with a CHD, see your cardiologist, or specialized heart doctor, regularly and commit to stay in care as you get older.

Living with a Congenital Heart Defect

Specialized care across the lifespan can help children and adults with a CHD live as healthily as possible. Seeing a cardiologist, or specialized heart doctor, for regular checkups is an important part of staying healthy.

Children and adults with a CHD can help with their health care by knowing their medical history, including the following information:

Type(s) of heart defect(s) they have.
Procedures or surgeries they have received.
Medicines and doses of these medicines that they are taking currently and have taken in the past.
Type(s) of medical care they are receiving now.

As children transition to adult health care, it is important to tell any new healthcare provider(s) about their CHD. Adults with some types of CHDs might need to be cared for by doctors with specialized training in caring for adults with a CHD. To help find a provider with this expertise, visit the Adult Congenital Heart Association's Clinic Directory.

William was born with a congenital heart defect. His parents were told that he would not survive even a year.

William's Story: The Importance of Care for Life

William was born with a CHD, tetralogy of Fallot, in 1954. His parents were told that he would not survive even a year. At that time, the option of surgery was new and very few doctors were skilled in the type of procedure used to treat this CHD. In 1966, at the age of 11, he had surgery. The medical care had advanced, and he was very lucky. He continued to do well until May of 1969, when his doctor discovered that his heart rate was dangerously low: less than 30 beats per minute. Soon after this discovery, William got his first pacemaker. Again, because of new developments in medical care, he was lucky. Today, he is 60 years old and has an implanted cardiac defibrillator.

Today, babies like William, who are born with tetralogy of Fallot or other critical congenital heart defects, are diagnosed prenatally or shortly after birth so they can get the care they need within the first few weeks of life. If William was born today with the same heart defect, the surgery would be done at 4-8 weeks of age. As medical technology advances, people with a CHD benefit. William says, "Now, we live longer, healthier lives. However, our surgery is not a total cure, and, as we age, we still suffer effects of these conditions. Continued medical care and ongoing research is vitally important to each of us."

Heart Defects: CDC Activities

CDC works to identify the causes of CHDs, find opportunities for prevention, improve timely recognition, and improve the health of people living with these conditions. Understanding the potential causes of CHDs can lead to recommendations, policies, and services to help prevent them. Researching health issues and needs across the lifespan can help plan for services and ensure individuals born with these conditions are getting the care they need throughout their lives. Below is a summary of CDC's activities focused on heart defects:

Surveillance or disease tracking:
- State programs: CDC funds and coordinates the Metropolitan Atlanta Congenital Defects Program (MACDP) . CDC also funds 14 population-based state tracking programs. Birth defects tracking systems are vital to help us find out where and when birth defects occur and whom they affect.
- Adolescents and adults: CDC is working with three sites to track congenital heart defects among adolescents and adults in order to learn about their health issues and needs across the lifespan.
Research: CDC funds the Centers for Birth Defects Research and Prevention, which collaborate on large studies such as the National Birth Defects Prevention Study (births 1997-2011) and the Birth Defects Study To Evaluate Pregnancy exposureS (began with births in 2014). These studies work to identify factors that increase the risk for birth defects, including heart defects.
Collaboration:
- CDC provides technical assistance to the Congenital Heart Public Health Consortium , a unique collaboration that brings together families, experts, and organizations to address congenital heart disease.
- CDC promotes collaboration between birth defects tracking programs and newborn screening programs for critical CHD screening activities. State birth defects programs collect data on CHDs that can help evaluate the effectiveness of newborn screening for critical CHD by looking at false positives (babies who failed the critical CHD screening but do not actually have a critical CHD after further evaluation) and false negatives (babies who passed the screen suggesting there was no critical CHD but actually did have a critical CHD).