Preventing a heart infection
A congenital heart defect can raise the risk of an infection in the heart called endocarditis. To help prevent this infection, your child needs to take excellent care of his or her teeth throughout life. Call your child's doctor if he or she has signs of a skin infection or infected wound.
Some children take antibiotics before having any dental and surgical procedures that could put bacteria or fungi into the blood. The antibiotics lower the risk of getting endocarditis.
Helping with emotional issues
Children and teens with congenital heart defects may have
self-esteem issues because of how they look. They may have scars from repeated
surgeries, and they may be smaller, have
clubbing, or have limits on how active they can
Children may feel alone and have trouble coping because they
have to stay in the hospital often. Most children deal well with having a heart defect. But some children with serious heart
defects may have a hard time feeling "normal."
Transitioning from teen to adult
As children get older, you can gradually teach them about their heart defect and how to care for their own health. Your child's doctor can help you teach self-care skills to your child. These skills include taking medicines or limiting exercise, if needed. A heart-healthy lifestyle is also very important and includes not smoking and eating healthy foods.1
When your child is an adult, he or she will need routine checkups. Be sure that he or she has a primary care physician. Your child might also need to see a cardiologist regularly, such as once a year.2
teen with a congenital heart defect might have restrictions on employment, then vocational counseling and employment advice may be helpful for planning a career.
Talk with a health professional or the school counselor for information.
Taking care of yourself
Dealing with a lifelong and possibly life-threatening illness in your
child can have a strong impact on your life as a parent. It can be hard to accept that your child has a serious illness. And it's
normal to worry about the effect the condition will have on your child's
Try to take good care of your own physical and emotional health. Doing so will help give you the energy needed to care for your child with special needs.
It might help to:
- Learn all you can about your child's heart
- Stop blaming yourself. You didn't cause the heart defect.
Many things occurred for the defect to happen. No single factor causes
congenital heart defects.
- Allow yourself to
grieve about having a child with a
- Ask questions. Don't expect to remember everything that
is involved in caring for your child. Ask questions when you don't understand.
Ask your doctor for written directions on caring for your child. If directions
are written, you can look at them later and call the doctor if you have
- Join a support group. It's helpful to be in contact with organizations and
people who can offer support and answer your questions.
Talk with your health professional to see whether there
is a local support group you might join. A support group is a good place to
meet other parents who are dealing with similar issues.
- Talk to a counselor.
It's normal to feel sad. You may grieve because your baby is not the perfectly
healthy infant you imagined. If you or a family member continues to feel
extremely sad, guilty, or depressed or is otherwise having trouble dealing with
your child's illness, talk with a doctor.
- Get financial help if needed. Expenses can quickly multiply if your child's heart
defect requires several hospital stays and tests. You may qualify for help from
organizations. Talk with
your doctor about a referral to a social worker or financial
counselor who can help you.
- Know your health insurance options. In the United States, children with congenital heart defects may
qualify for public health insurance programs. These programs vary depending on
the state in which you live, but they may include Medicaid, Title V, or the
Children with Special Health Care Needs (CSHCN) program.
Family counseling. Coping
with a child who has a lifelong illness impacts the entire family. If you feel
that you or your family needs help dealing with the condition, talk with a
health professional about counseling.