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Living With a Congenital Heart Defect

The outlook for children who have congenital heart defects is much better today than in the past. Advances in testing and treatment allow most of these children to survive to adulthood. They’re able to live active, productive lives.

Many of these children need only occasional checkups with a cardiologist (heart specialist) as they grow up and go through adult life.

Children who have complex heart defects need long-term care from trained specialists. This will help them stay as healthy as possible and maintain a good quality of life.

Children and Teens

Ongoing Medical Care

Ongoing medical care is important for your child's health. This includes:

  • Having checkups with your child's heart specialist as directed
  • Seeing your child’s pediatrician or family doctor for routine exams
  • Taking medicines as prescribed

Children who have severe heart defects may be at slightly increased risk for infective endocarditis (IE). IE is a serious infection of the inner lining of the heart chambers and valves.

Your child's doctor or dentist may give your child antibiotics before some medical or dental procedures (such as surgery or dental cleanings) that can allow bacteria into the bloodstream. Your child's doctor will tell you whether your child needs antibiotics before such procedures.

To reduce the risk of IE, gently brush your young child's teeth every day as soon as they begin to come in. As your child gets older, make sure he or she brushes every day and sees a dentist regularly. Talk with your child's doctor and dentist about how to keep your child's mouth and teeth healthy.

As children who have heart defects grow up and become teens, they should learn how their hearts differ from normal hearts. They also should know what kind of defect they have, how it was treated, and what kind of care is still needed. They should be able to recognize signs and symptoms and know how to respond.

Work with your child’s health care providers to compile a packet of medical records and information that covers all aspects of your child's heart defect, including:

  • Diagnosis
  • Procedures or surgeries
  • Prescribed medicines
  • Recommendations about medical followup and how to prevent complications
  • Health insurance

Review your current health insurance plan so you understand your coverage. Keeping your health insurance current is important. If you plan to change jobs, find out whether your new health insurance will cover care for your child's congenital heart defect.

Feeding and Nutrition

Some babies and children who have congenital heart defects don't grow and develop as fast as other children. If your child's heart has to pump harder than normal because of a heart defect, he or she may tire quickly while feeding. As a result, your child may not be able to eat enough.

Poor feeding may cause your child to be smaller and thinner than other children. Your child also may start certain activities—such as rolling over, sitting, and walking—later than other children. After treatments and surgery, growth and development often improve.

To help your baby get enough calories, ask his or her doctor about the best feeding schedule. Also, ask whether your baby needs any nutritional supplements. Make sure your child has nutritious meals and snacks as he or she grows. This will help with growth and development.

Physical Activity

Physical activity helps children strengthen their muscles and stay healthy. Ask your child's doctor how much and what kinds of physical activity are best for your child. Some children and teens who have congenital heart defects may need to limit the amount or type of activity they do.

Remember to ask the doctor for a note that describes any limits on your child's physical activities. Schools and other groups may need this information.

Emotional Issues

Children and teens who have serious conditions or illnesses may have emotional issues. For example, they may feel isolated if they have to be in the hospital a lot.

Some may feel sad or frustrated with their body image and their inability to be a "normal" kid. Sometimes brothers or sisters are jealous of a child who needs a lot of attention for medical problems.

If you have concerns about your child's emotional health, talk with his or her doctor.

Transition of Care

The move from pediatric care to adult care is an important step in treatment. Talk with your teen’s health care team about creating a plan to help your teen transition to adult care. Start planning as soon as your teen is able and willing to fully take part in this process.

Following a transition plan has many benefits. It will help your teen:

  • Get used to talking with health care providers
  • Learn about the adult health care system
  • Understand the importance of having health insurance and learn what his or her insurance covers
  • Take responsibility for his or her medical care

A transition plan also can help your teen think about other important issues, such as future education and employment, birth control and pregnancy planning, and making healthy choices about nutrition, physical activity, and other lifestyle habits.


Adults who needed regular medical checkups for congenital heart defects in their youth may need to keep seeing specialists into adulthood. These adults should pay attention to the following issues.

Medical History

Some people think that the surgery they had in childhood for their congenital heart defects was a cure. They don't realize they may need regular medical followup in adulthood to maintain good health.

Some adults may not know what kind of heart defect they had (or still have) or how it was repaired. They should learn about their medical history and know as much as possible about any medicines they're taking.

Preventing Infective Endocarditis

People who have congenital heart defects may need antibiotics before some medical or dental procedures that can allow bacteria to enter the bloodstream. These bacteria can cause infective endocarditis (IE). IE is a serious infection of the inner lining of the heart chambers and valves.

Your doctor will tell you whether you need to take antibiotics before medical or dental procedures. Regular brushing, flossing, and visits to the dentist also can help prevent IE.

Birth Control and Pregnancy

Women who have heart defects should talk with their doctors about the safest type of birth control for them. Many of these women can safely use most methods. However, some women should avoid certain types of birth control, such as birth control pills or intrauterine devices (IUDs).

Many women who have simple heart defects can have normal pregnancies and deliveries. Women with congenital heart defects who want to become pregnant (or who are pregnant) should talk with their doctors about the health risks. They also should consult with doctors who specialize in treating pregnant women who have congenital heart defects.

Women who have congenital heart defects may be at higher risk than other women of having babies who have congenital heart defects.

Pregnant women who have congenital heart defects should talk with their doctors about whether to have fetal echocardiography (echo). This test uses sound waves to create images of the baby's heart.

Fetal echo gives the doctor information about the size and shape of the baby's heart. This test also shows how well the heart’s chambers and valves are working.

Health Insurance and Employment

Adults who have congenital heart defects should carefully consider how changing jobs will affect their health insurance coverage.

Some health plans have waiting periods or clauses to exclude some kinds of coverage. Before making any job changes, find out whether the change will affect your insurance coverage.

Several laws protect the employment rights of people who have health conditions, such as congenital heart defects. The Americans with Disabilities Act and the Work Incentives Improvement Act try to ensure fairness in hiring for all people, including those who have health conditions.

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Updated: July 1, 2011