Living With a Congenital Heart Defect

The outlook for a child with a congenital heart defect is much better today than in past years. Advances in testing and treatment mean that most children with heart defects grow into adulthood and are able to live active, productive lives. Many need no special care or only occasional checkups with a cardiologist as they grow up and go through adult life.

The small number of children who have complex heart defects need long-term, special care by trained specialists to stay as healthy as possible and maintain a good quality of life.

Children and Teens With Congenital Heart Defects

Routine Medical Care

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

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

Most children with severe heart defects are at increased risk for bacterial endocarditis, a serious infection of the heart valves or lining of the heart. Your child's doctor or dentist may give your child antibiotics before medical or dental procedures (such as surgery or dental cleanings) that could allow bacteria into the bloodstream. Talk to your child's doctor about whether your child needs to take antibiotics before such procedures.

As children with heart defects grow up and become teens, it’s important that they understand what kind of defect they have, how it was treated, and what kind of care may still be needed. This understanding will help the teen take responsibility for his or her health. It also will help ensure a smooth transition from care by a pediatric cardiologist to care by an adult cardiologist. Young adults with complex congenital heart defects require ongoing care by doctors who specialize in adult congenital heart defects.

You may want to work with your health care providers to put together a packet with 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

Keeping your health insurance current is important. For example, if your child is covered under health insurance through your employer and you plan to change jobs, find out if health insurance through your new employer will cover care for your child’s congenital heart defect. Some health insurance plans may not cover medical conditions that you or your family member had before joining the new plan.

It’s also very important for your child to have health insurance as adulthood approaches. Review your current health insurance plan. Find out how coverage can be extended to your child beyond the age of 18. Some policies may allow you to keep your child on your plan if he or she remains in school or is disabled.

Feeding and Nutrition

Some babies and children with congenital heart defects don’t grow and develop as fast as other children who are the same age. If your child’s heart has to pump harder than normal because of the defect, he or she may tire quickly when feeding or eating and not be able to eat enough.

As a result, your child may be smaller and thinner than other children. Your child also may start 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, discuss with his or her doctor the best feeding schedule and any supplements your baby may need. Make sure your child has nutritious meals and snacks as he or she grows to help with growth and development.

Exercise and Physical Activity

Exercise helps children strengthen their muscles and stay healthy. Discuss with your child’s doctor how much and what kinds of physical activities are best for your child. Some children and teens with congenital heart defects may need to limit the amount or type of exercise they do.

Remember to ask the doctor for a note for school and other organizations describing any limits on your child’s exercise or physical activities.

Emotional Issues

It’s common for children and teens with serious conditions or illnesses to have a hard time emotionally or to feel isolated if they have to be in the hospital a lot. Some 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 to his or her doctor.

Adults With Congenital Heart Defects

Adults with congenital heart defects who needed regular medical checkups in their youth may need to keep seeing a specialist who can care for their health. They will need to pay attention to the following issues.

Medical History

Sometimes people mistakenly believe that the surgery they had in childhood for their congenital heart defect was a “cure.” They don’t realize that regular medical followup may be needed 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 Bacterial Endocarditis

Some people may need antibiotics before medical or dental procedures that could allow bacteria to enter the bloodstream. Talk to your doctor about whether you need to take antibiotics before such procedures. Regular brushing, flossing, and visits to the dentist also can help prevent bacterial endocarditis.

Contraception and Pregnancy

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

Many women with simple heart defects can have a normal pregnancy and delivery. Women with congenital heart defects who want to become pregnant (or who are pregnant) should talk with their doctor about the health risks. They also may want to consult with specialists who help pregnant women with congenital heart defects.

Health Insurance and Employment

When thinking about changing jobs, adults with congenital heart defects should carefully consider the impact on 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 health insurance coverage.

Several laws protect the employment rights of people who have 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 with health conditions such as heart defects.