Living With a Congenital Heart Defect

The outlook for a child who has a congenital heart defect is much better today than in the past. Advances in testing and treatment mean that most children who have heart defects survive to adulthood and are 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, special care by 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:

• Checkups with your child's heart specialist as directed
• Routine exams with your child's pediatrician or family doctor
• 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 your heart chambers and valves.

In a few situations, 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. Your child's doctor will tell you whether your child needs to take 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 baby or child's mouth and teeth healthy.

As children who have 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 is still needed.

This understanding will help these teens take responsibility for their health. It also will help ensure a smooth transition when they start getting care from a cardiologist instead of a pediatric cardiologist. A cardiologist treats adults who have heart problems.

Young adults who have complex congenital heart defects require ongoing care by doctors who specialize in adult congenital heart disease.

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

Keeping your health insurance current is important. For example, if you plan to change jobs, find out whether your new health insurance will cover care for your child's congenital heart defect. Some health insurance plans may not cover medical conditions that were covered under a previous 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 you can extend coverage 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 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 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 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, talk to his or her doctor about the best feeding schedule and any nutritional supplements your baby may need. 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. Discuss with 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 for school and other organizations that describes any limits on your child's physical activities.

Emotional Issues

It's common for children and teens who have 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

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

Medical History

Some people believe that the surgery they had in childhood for their congenital heart defects 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 Infective Endocarditis

In a few situations, people who have congenital heart defects may need antibiotics before medical or dental procedures that could allow bacteria to enter the bloodstream.

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

Contraception and Pregnancy

Women who have heart defects should talk with their doctors about the safest type of birth control for them. Many 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 a normal pregnancy and delivery. 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 and how well the chambers and valves are working.

Health Insurance and Employment

When thinking about changing jobs, adults who have congenital heart defects should carefully consider how it 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 health 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.