Living With Tetralogy of Fallot

Tetralogy of Fallot (ToF) is a combination of four heart defects that are present at birth (congenital). This condition is usually treated with surgery in childhood. Children with tetralogy of Fallot are at risk of developing new heart problems. You should take precautions both before and after your child’s surgery to prevent problems that are related to the condition or its treatment.

Follow these instructions at home:

Tetralogy spells

When symptoms of tetralogy of Fallot occur suddenly, it is called a tetralogy spell. Tetralogy spells occur when there is a sudden drop in blood oxygen levels. If your child has a tetralogy spell:

• Bring your child’s knees up to his or her chest (the knee-chest position).
• Try to calm your child down.
• If your child’s symptoms do not improve immediately, call local emergency services (911 in U.S.).

Medicines

• Give over-the-counter and prescription medicines only as told by your child’s health care provider.
• Check with your child’s health care provider before your child starts any new medicines.
• If your child is prescribed an antibiotic medicine, have your child take it as told by the health care provider. Do not stop giving your child the antibiotic even if your child starts to feel better.

Activity

• Have your child exercise as directed by his or her health care provider. Your child may need to limit certain types of activity. Ask your child’s health care provider what activities are safe for your child.

Dental care

• Before going to the dentist, talk with your child’s health care provider about whether your child needs to take antibiotic medicines to help prevent infection. Your child may need to take antibiotics before dental procedures, including routine cleanings.
• Have your child visit the dentist regularly to prevent tooth decay. Tooth decay can lead to infections in the heart.
• Always make sure that your child’s dentist knows that your child has tetralogy of Fallot.

Follow-up visits

• Keep all follow-up visits as told by your child’s health care provider. This is important because visits allow problems related to your child’s condition and its treatment to be found early, which makes problems more likely to be treated and reversed. Your child will need to see a health care provider and heart specialist (cardiologist) regularly for life.
• During follow-up visits, your child’s health care provider will check your child’s growth and development and perform tests to make sure that any existing problems are under control and to check for new problems. Tests may include:
  • A Holter monitor or event monitor test. This test involves wearing a portable device that monitors the heart rate over time.
  • Electrocardiogram (ECG). This test records the electrical impulses of the heart.
  • Exercise stress test. This test measures heart function before, during, and after exercise.
  • Echocardiogram. This test produces images of the heart by using sound waves.
  • MRI. This test creates clear pictures of the structures inside the heart.

General instructions

• Tell all of your child’s health care providers, including his or her dentist, that your child has tetralogy of Fallot.
• Consider having your child wear a medical alert bracelet or necklace that says that he or she has tetralogy of Fallot.
• If you are feeling stressed or having trouble coping with your child’s condition, consider getting counseling or joining a parental support group.

Get help right away if:

• Your child’s skin or lips start to turn a bluish color (cyanosis).
• Your child has difficulty breathing.
• Your child is unusually tired and limp.
• Your child does not respond when being talked to or touched.
• Your child has jerky moments that he or she cannot control (seizure).
• Your child has symptoms of a tetralogy spell that do not improve immediately.

These symptoms may represent a serious problem that is an emergency. Do not wait to see if the symptoms will go away. Get medical help right away. Call your local emergency services (911 in the U.S.).

Summary

• Tetralogy of Fallot (ToF) is a combination of four heart defects that are present at birth (congenital).
• This condition is usually treated with surgery in childhood.
• If your child is prescribed an antibiotic medicine, have your child take it as told by your health care provider.
• Ask your child’s health care provider what activities are safe for your child.
• Tell all of your child’s health care providers, including his or her dentist, that your child has tetralogy of Fallot.