How is it 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 determine what extra nutrition your baby needs.

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.

Talk to your doctor about 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

Some children who have tetralogy of Fallot may need to limit certain types of physical activity. The limits vary with each child. Talk to your child’s doctor about 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:

• Seeing a pediatric cardiologist for heart checkups as directed

• Seeing a pediatrician or family health care provider for routine exams

• Making sure your child 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 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 child’s mouth and teeth healthy.

Consider having your child wear a medical alert bracelet or necklace. This alerts anyone caring for your child that the child has tetralogy of Fallot.

You may want to work with your health care provid...