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Congenital Heart Defects: Caring for Your Child - Topic Overview

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 be.

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

If your 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 future.

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 defect.
  • 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 heart defect.
  • 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 questions.
  • 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.

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WebMD Medical Reference from Healthwise

Last Updated: October 11, 2011
This information is not intended to replace the advice of a doctor. Healthwise disclaims any liability for the decisions you make based on this information.
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