What Happens
Congenital heart defects happen when the heart does not form normally as the baby (fetus) grows in the uterus. Heart defects may cause problems with blood flow through the heart after a baby is born. The problems can affect the baby's blood and oxygen supply.
If the problems are not treated, the baby could develop heart failure or other complications. Abnormally shaped heart valves, in particular, can lead to complications such as endocarditis or narrowed or leaky heart valves.
Newborns with serious life-threatening defects usually require immediate surgery to repair the damage. Some children may die even with early treatment. Medicines are sometimes used while waiting to see whether a mild defect heals on its own or until a child is strong enough to have heart catheterization or surgery.
Congenital heart defects may not be found until the teenage years or later. Some defects get better on their own and do not require treatment.
Although many children and adults with corrected heart defects lead normal lives, heart defects can be related to or cause long-term risks that may include:
- Developmental delays or disabilities or behavior problems.1
- Certain physical traits, such as smaller-than-average adult height and weight, clubbing, or cyanosis (bluish tint to the skin from low blood-oxygen levels). These can present challenges to a person's self-esteem and confidence.
- A shorter life span than average, if the defect is severe or if complications, such as endocarditis, develop.
If you are an adult with a congenital heart defect, you may have to make decisions about:
- Pregnancy and birth control. Some congential heart defects are passed down through families. For this reason, you may want to seek genetic counseling to find out your risk for having a child with a heart defect. Pregnancy may increase certain health risks for women who have heart defects, requiring close monitoring from a health professional. If you are trying to prevent pregnancy, you will need to select a form of birth control that poses the lowest risk to your health.
- Type of employment. Get an expert opinion from a cardiologist about your physical capabilities and risk for future heart problems as you explore career options. With this information, you can make realistic choices and get appropriate training. Some people may assume that all heart defects are serious enough to keep someone from normal activities or work. But very few adults with congenital heart defects are considered disabled.
- Health insurance. Be aware that people with congenital heart defects often have difficulties when trying to change health insurance or when applying for new coverage. Research your options carefully before changing policies and find out whether you may qualify for state or federal assistance programs.
- Use of antibiotics. Most people with congenital heart defects have a lifelong increased risk for endocarditis. They need to take excellent care of their teeth and any types of infections. They may need to take antibiotics before having certain dental and surgical procedures.
- Exercise. You need to talk to your doctor before getting involved in sports or exercising. You may need an exercise electrocardiogram (cardiac stress test), sometimes done along with a type of echocardiogram, to measure how your heart responds to exercise.