Your Child's Special Needs

Routine medical care is important for all children, including those with congenital heart disease. Your pediatric cardiologist will want your pediatrician or family doctor to check your child regularly. A child with a heart defect usually can get through most common childhood illnesses as safely as children with normal hearts. Your child doesn't need antibiotics for every infection just because of the congenital heart defect.

Before or after surgery, your child should have routine care and the standard "shots," or immunizations, at the ages doctors recommend for all children. Your child may also need additional immunizations, such as for influenza.

Checkups With Your Pediatric Cardiologist
To be sure that your child is making good progress, periodic heart checkups are necessary. Usually, they're scheduled more often (days, weeks, months) just after the diagnosis or surgery and less often later. Depending upon your child's problem, periodic testing may be needed. These tests may include:

• Blood test
• Standard electrocardiogram
• 24-hour ambulatory electrocardiogram (Holter scan)
• Chest X-ray
• Doppler/echocardiogram or
• Exercise testing.

Some children need follow-up cardiac catheterization.

Preventing Bacterial Endocarditis
Bacterial endocarditis (BE) is an infection caused by bacteria that enter the bloodstream and settle in the heart lining, a heart valve or a blood vessel.

Although BE is uncommon, most children with a heart defect have a greater risk of developing it. The American Heart Association recently updated guidelines for preventing endocarditis and concluded that there is no convincing evidence that links dental, gastrointestinal or genitourinary tract procedures with the development of BE. The prophylactic use of antibiotics prior to a dental procedure is now recommended ONLY for those patients with the highest risk of adverse outcome resulting from BE, such as patients with a prosthetic cardiac valve, previous BE, or those with specific forms of congenital heart disease. The committee recommends antibiotic prophylaxis prior to a dental procedure for congenital heart disease (CHD) patients with:

• Unrepaired cyanotic CHD, including palliative shunts and conduits
• Completely repaired congenital heart defect with prosthetic material or device, whether placed by surgery or by catheter intervention, during the first six months after the procedure^†
• Repaired CHD with residual defects at the site or adjacent to the site of a prosthetic patch or prosthetic device (which inhibit endothelialization)
• Cardiac transplantation recipients who develop heart valve dysfunction

^† Prophylaxis is recommended because endothelialization of prosthetic material occurs within six months after the procedure.

Antibiotic prophylaxis solely to prevent BE is no longer recommended.

Your pediatric cardiologist will give you more information about preventing BE. That might include the American Heart Association wallet card. By showing this card to your dentist, pediatrician, family doctor or other physician, the proper antibiotic and dose can be given. This dose will vary according to your child's weight, heart condition and the planned procedure.

Amount of Activity
Most children with a congenital heart defect can be fully active. They don't need restrictions. In fact, pediatric cardiologists encourage children to do physical activity that helps keep their hearts fit and can be enjoyed for a lifetime. Such healthful activities include swimming, bicycling, running, rope jumping and tennis. In a very few specific heart conditions, a pediatric cardiologist may advise that a child avoid some strenuous physical activities, such as competitive sports.

For Women of Childbearing Age
Young women with congenital heart defects often have three special concerns as they think about having a baby. "Is my heart strong enough for a pregnancy? What should I use for birth control? Will my child have a heart problem?

Most women with a mild heart defect who've had successful surgery can have a normal pregnancy and delivery. In some cases (for example, women with cyanosis or a major heart problem), pregnancy is dangerous and should be avoided. Your cardiologist can help with these concerns.

When thinking about birth control, each case is different. Some women should avoid the "pill" and use other forms of birth control instead. Your cardiologist can give advice about selecting a contraceptive method.

In the general population, the chance of having a child with a heart defect is about 1 in 100. The chance is slightly higher among women who have a heart defect and among sisters and brothers of children with heart disease. When a baby has a heart problem, it resembles the mother's own defect in half of the cases.

A pregnant woman should follow a nutritious diet and avoid smoking and drinking alcohol. She should also have her doctor approve any medicine she uses.

Financial Support
Diagnosing and treating congenital heart defects with surgery is costly. Your child may need many specialists and several days in the hospital. If hospitalization and care is at a center far from your home, you'll need money for travel, food and lodging. Because the medical expenses of cardiac care are often extremely high, some families - even those with health insurance - need help to pay them. Each state has an agency to help eligible families meet their medical expenses. Your doctor can give more information about the program in your state and help you apply. The amount of financial aid you can get depends upon the rules for eligibility in your state, your financial situation and insurance policy, and the cost of cardiac care.

Take a look at your health insurance. Most families are covered under a group plan bought by an employer. Under such a plan, all family members must be covered even though they have preexisting health problems. If you're thinking about changing jobs, find out your child's eligibility for health coverage by the new employer, or if your child can stay covered under your current policy. Don't stop your existing health insurance until you know your child is covered by the new policy.

Special Educational Needs
Education is important for all children. Fortunately, almost all children with congenital heart defects can attend regular schools. Most children don't have any physical or mental limitations that prevent them from participating fully in the school program. In rare cases, a child has special educational needs. Most school districts, with the aid of their school nurses, can evaluate these children and make changes to meet their needs. For example, the school may need to limit a child's stair climbing or provide special transportation.

Vocation
For most people with congenital heart defects, job choices are not limited. Young adults with heart defects have entered a variety of professions and occupations. A few people may have a limited capacity for exercise or low endurance. Job counselors can help them choose less active types of work.

High school and college counselors can help a person select a vocation. Sometimes the state vocational rehabilitation program may be needed. Such help might be needed for those rare patients whose ability to earn an income has been impaired by a physical handicap due to a heart problem.