Read on for a short overview of congenital heart disease in the United States. Then please use this website and other resources to learn more about congenital heart disease, who it affects, and how treatment is changing what it means to be born with heart disease.

Who Does Congenital Heart Disease Affect, and How?

• Heart defects are the most common type of defect babies are born with, affecting approximately 1 out of every 110 babies born today.
• Every year, 35,000 babies are born with congenital heart disease in the United States, according to the National Heart, Lung and Blood Institute.
• More than 1 million U.S. adults are living with congenital heart disease.
• According to the American Heart Association’s Heart Disease and Stroke Statistics—2012 Update, heart defects continue to be the greatest source of infant deaths related to birth defects.
• The good news is that overall outcomes are improving for patients with congenital heart disease. A study published in 2010 found that deaths from congenital heart disease decreased in the United States by 24.1 percent from 1999 to 2006.
• This same 2010 study found, however, that racial disparities continue to impact survival rates. Infant mortality from congenital heart disease is higher among African Americans than Caucasians.
• According to the Adult Congenital Heart Association, 90 percent of children who were born with a heart defect will now survive into adulthood.

Causes of Congenital Heart Disease

Much is still unknown about the causes of congenital heart disease, and in most cases a cause is never identified. Some heart defects have a genetic link, while others may be influenced by environmental factors—or some combination of genetic and environmental. The following non-genetic risk factors have been found to contribute to varying degrees to congenital heart disease:

• Maternal smoking during pregnancy
• Maternal obesity
• Exposure to certain air pollutants, solvents and pesticides
• Low levels of maternal folic acid ingestion during pregnancy
• Poorly controlled pre-pregnancy and gestational maternal diabetes

Common Forms of Congenital Heart Disease

Congenital heart disease is a term that describes many types of abnormal heart and blood vessel structures. For example, the muscular wall that separates the left and right sides of the heart can have holes, blood vessels can be attached in the wrong places, or the valves that control blood flow through the heart may not be formed correctly. In all cases, the normal circulation that pushes oxygen-rich blood out from the heart to the body and receives oxygen-poor blood from the body and sends it to the lungs is disrupted or doesn’t fully function.

The two most common congenital heart defects are ventricular septal defect (VSD) and atrial septal defect (ASD). According to the American Heart Association, of the thousands of babies born each year with a cardiovascular defect, 4 to 10 percent have septal defects.

• A ventricular septal defect (VSD) is a hole in the wall (called the “septum”) that separates the heart’s left and right ventricles, the lower pumping chambers.
• An atrial septal defect (ASD) is a hole in the septum between the heart’s two upper chambers (the atria).

Treatment of Congenital Heart Disease

Not all congenital heart disease requires treatment. For those defects that do need to be treated, options for treatment generally consist of some combination of the following:

• Medical therapy (medications) 
• Interventional procedures  (use of thin, flexible tubes called catheters to make repairs to the heart and blood vessels)
• Surgery

Learn from Patient Stories

If you are the parent of a child who was born with a heart defect or are an adult with congenital heart disease, reading stories from people who are having the same experiences can be powerful. Visit the SecondsCount.org Stories Center to share the stories of patients who have undergone interventional and hybrid (surgical and interventional) procedures to treat congenital heart disease.

Congenital Heart Disease in Adulthood

Successes in treating congenital heart disease in infancy and childhood now mean that more patients are arriving in adulthood with a need for ongoing cardiac care. Additionally, some heart defects are not identified until adulthood. Because of this increasing numbers of adults living with congenital heart disease, specialized centers have been developed around the United States and the world to provide comprehensive care. At these centers, adults who have congenital heart disease are seen by specialists in managing their needs. If you are an adult with congenital heart disease, these doctors can not only help you with medical issues, they are also trained to discuss other important concerns such as employment, insurability status, support groups, pregnancy, contraception, and additional non-cardiac medical issues.

References