Living With Tetralogy of Fallot

The outlook for a child born with tetralogy of Fallot is much better today than in the past. Advances in testing and treatment mean that most children who have this congenital heart defect survive to adulthood. However, they need long-term care from specialists to stay as healthy as possible.

Caring for Your Child at Home

Feeding and Nutrition

Babies who have tetralogy of Fallot can tire while nursing or feeding. Small, frequent meals may be easier for your baby to handle.

Your child also may need extra nutrition. A supplement or an extra feeding can give the baby more calories, vitamins, or iron. Your child's doctors will work with you to decide whether your baby needs extra nutrition.

Tet Spells

"Tet spells" can occur in babies whose tetralogy of Fallot hasn't yet been repaired. Lowering your baby's anxiety or stress can help prevent tet spells and save the baby's energy. For example, slowly picking up your baby and speaking in a soothing voice can avoid startling him or her, which may prevent or reduce crying.

Ask your doctor how you can manage your child's tet spells. Your doctor may suggest that you:

• Bring the child's knees up tight against his or her chest (this is called the knee–chest position) or have your child squat down. This will increase blood flow to the lungs.
• Try to calm your child.
• Call 9–1–1 if the symptoms don't improve right away.

Activity Restrictions

If your child was born with tetralogy of Fallot, he or she may have some physical activity limits. The limits vary with each child. Ask your child's doctor whether:

• Your child needs to restrict activity or exercise
• Your child can play in organized sports, especially contact sports
• You need a note for your child's school or coaches about limiting your child's exercise

Ongoing Medical Care

Children who have tetralogy of Fallot should have ongoing medical care. This includes making sure your child:

• Sees a pediatric cardiologist for heart checkups as directed
• Sees a pediatrician or family health care provider for routine exams
• Takes medicines as prescribed

Children who have severe heart defects, like tetralogy of Fallot, 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 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 child's mouth and teeth healthy.

Consider having your child wear a medical ID bracelet or necklace. This alerts anyone caring for your child that the child has a heart defect.

Special Needs for Teenagers and Adults

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 defects they have, how they were treated, and what type 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.

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.

Additional Surgery and Other Complications

Some teenagers or young adults need additional surgery. For example, the pulmonary valve can narrow again over time, reducing blood flow. A surgeon may need to widen or replace the valve. The cardiologist will discuss with you and your teenager the need for any additional heart surgeries.

Over time, people who have had surgery to repair tetralogy of Fallot also may face other heart problems.

Leaking heart valves. The heart has four valves that open and close with each heartbeat. These valves ensure that blood flows only in one direction.

If a valve doesn't seal tightly, blood can leak back into the chamber it came from. This is called backflow or regurgitation (re-GUR-jih-TA-shun), and it can lead to symptoms and complications.

The most frequent problem that occurs after tetralogy of Fallot repair is pulmonary backflow, or leaking from the pulmonary valve. Backflow from the tricuspid valve and aortic valve also can occur.

Surgery is used to repair or replace the leaking valve. In some cases, catheter-based procedures may be used to replace leaking valves.

Arrhythmias. Arrhythmias (ah-RITH-me-ahs) are another complication that may occur. Arrhythmias are problems with the rate or rhythm of the heartbeat.

Arrhythmias associated with tetralogy of Fallot include ventricular tachycardia, atrial fibrillation, and atrial flutter. For more information, go to the Health Topics Arrhythmia article.

Doctors use medicines to control these arrhythmias. They also may recommend medical procedures or surgery to treat arrhythmias.

Pulmonary artery branch stenosis. Over time, the pulmonary valve can narrow again. This will reduce blood flow to the lungs, making the heart work harder than it should. Several surgical techniques can be used to fix this problem.

Right ventricular aneurysms. The patch used to fix a ventricular septal defect (VSD) can cause areas of the ventricle to weaken. These areas, called aneurysms (AN-u-risms), can bulge or "balloon" out. Aneurysms make it hard for the heart to work as well as it should. Aneurysms are repaired with surgery.

Residual ventricular septal defects. Some VSDs still leak, even after they've been repaired. VSDs are repaired again if they're large or are causing problems with the function of the right ventricle.

Coronary heart disease. As people who have repaired tetralogy of Fallot approach middle age, they can develop coronary heart disease (CHD). (Adults who don't have congenital heart defects also can develop CHD.)

CHD is a condition in which a waxy substance called plaque (plak) builds up in the coronary (heart) arteries. CHD can lead to chest pain, shortness of breath, and heart attack.

For people who have repaired tetralogy of Fallot, preventing CHD is important. The procedures used to treat CHD, such as coronary artery bypass grafting, can cause problems for these people.

Other Considerations

Many women with repaired tetralogy of Fallot who become pregnant are able to have successful, full-term pregnancies. Others may have difficult pregnancies.

Women with tetralogy of Fallot who want to become pregnant (or who are pregnant) should talk with their doctors about:

• Health risks during pregnancy
• Medicines they can take during pregnancy
• Any new or worsening symptoms

If possible, these women should consult specialists who take care of pregnant women who have heart conditions, such as congenital heart defects.

Adults who were born with tetralogy of Fallot should consider job changes carefully, because health benefits may change. Some health plans have waiting periods or clauses to exclude some types of coverage. Before making any job changes, find out whether the change will affect your health insurance.

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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