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 the majority of children with this
congenital
heart defect survive to adulthood. However, they do need long-term care by
specialists to stay as healthy as possible.
Babies and Children With Tetralogy of Fallot
Caring for Your Child at Home
Babies with tetralogy of Fallot can tire while
nursing or feeding. Small, frequent meals may be easier for your baby to
handle. He or she 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 decide what extra nutrition your baby may need.
Lowering your baby's anxiety or stress can help
prevent "tet spells" and save the baby's energy. For example, picking up your
baby slowly and speaking in a soothing voice can avoid startling him or her,
which may prevent or lessen crying.
Tet Spells
Talk to your doctor about how you can manage your
baby's or child's tet spells. Your doctor may suggest that you:
- Bring the baby's or 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 with tetralogy of Fallot may need to
limit certain types of exercise. The limits vary with each child. Talk to your
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 the school or coaches about
limiting your child's exercise
Routine Medical Care
Regular medical care for your child is important.
This includes:
- Seeing a pediatric cardiologist for heart
checkups as directed
- Seeing your child's pediatrician or family health
care provider for routine exams
- Making sure your child takes medicines as
prescribed
Children with severe heart defects, like tetralogy
of Fallot, are at increased risk for
bacterial endocarditis. This is a serious infection of the
heart valves or lining of the heart. These children may need to take
antibiotics before medical and dental procedures (such as surgery or dental
cleanings) that could allow bacteria to enter the bloodstream. Talk to your
child's doctor about whether your child needs to take antibiotics before such
procedures.
Consider having your child wear a medical alert
bracelet or necklace. This tells anyone caring for your child that the child
has a congenital heart defect.
You may want to work with your health care providers
to put together a packet with 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 you or your family member
had before joining the new plan.
Special Needs for Teenagers and Adults
As children with tetralogy of Fallot grow up and
become teens, it's important that they understand their heart defect, how it
was treated, and what kind of care may still be needed. This understanding will
help the teen take responsibility for his or her health. It also will help
ensure a smooth transition from care by a pediatric cardiologist to care by a
specialist in adult congenital heart disease.
It's also very important for teens to have health
insurance as adulthood approaches. Review your current health insurance plan.
Find out how coverage can be extended 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.
Some teenagers or young adults need additional
surgery. For example, the pulmonary valve can narrow over time, reducing blood
flow. The valve may need to be widened or replaced. Your 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 a number of other heart problems, such as:
Leaking Heart Valves
Heart valves make sure that blood flows only in one
direction. If the valve doesn't seal tightly, blood can leak back into the
chamber it came from. This backward flow of blood is called regurgitation
(re-GUR-ji-TA-shun), and it can lead to symptoms and complications.
The most frequent problem that occurs after
tetralogy of Fallot repair is pulmonary regurgitation, or leaking from the
pulmonary valve. Regurgitation of the tricuspid valve and aortic valve also can
occur. Surgery is necessary to repair or replace the leaking valve.
Arrhythmias
Arrhythmias—problems with the speed or rhythm
of the heartbeat—also can occur. Arrhythmias linked to tetralogy of
Fallot include ventricular tachycardia,
atrial
fibrillation, and atrial flutter. Ventricular tachycardia is when the
ventricles (lower chambers of the heart) beat too fast. Atrial fibrillation is
a fast and irregular contraction of the atria (the upper chambers of the
heart). Atrial flutter is a fast but regular contraction of the atria.
Medicines are used to control these arrhythmias. In
rare cases, a person may need a procedure or surgery to fix the problem.
Pulmonary Artery Branch Stenoses
Over time, the pulmonary blood vessels that were
enlarged to repair the tetralogy of Fallot defect 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 patches used when repairing tetralogy of Fallot
can create weakened areas in the ventricle that can bulge or
“balloon” out. These aneurysms (AN-u-risms) make it hard for the
heart to function as well as it should. This problem must be repaired with
surgery.
Residual Ventricular Septal Defects
Sometimes, a ventricular septal defect still leaks
even after it has been repaired. It's repaired again if it's large or is
causing problems with the function of the right ventricle.
Coronary Artery Disease
As people with repaired tetralogy of Fallot approach
middle age, they can develop CAD, just as adults without a heart defect can.
CAD occurs when coronary arteries become blocked due to the buildup of a
material called plaque (plak) on the inside of the blood vessels. This can lead
to chest pain, shortness of breath, and sometimes
heart
attack.
Preventing CAD is especially important because any
procedures, like
coronary
artery bypass grafting, that are done to relieve symptoms of CAD can cause
complications in people with repaired tetralogy of Fallot.
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 to their doctor about:
- Health risks during pregnancy
- Medicines they can take during pregnancy
- Any new or worsening symptoms
These women also may want to consult specialists who
take care of pregnant women with health conditions.
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 kinds 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 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 with health conditions such as heart defects.
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