Home Treatment

Congenital heart defects often are repaired with surgery or heart catheterization, but home treatment also plays an important role.

Coping with oxygen problems

Home treatment may include caring for a child who has cyanosis, or problems getting enough oxygen. Children with cyanosis may develop a bluish tint to the skin. If your child has "blue spells":

• Attempt to calm him or her. This is the most important thing you can do.
• Try placing the child with the knees to his or her chest—either on the back with the knees drawn up to the chest or in a sitting position with the chest to the knees.
• You may need to give your child oxygen if the spells are severe and do not improve with a change in position. Oxygen is given through a small tube at the nose. Your doctor will determine the proper amount of oxygen needed.
• Note when the blue spells occur and plan activities to try to decrease the spells.
• Try to prevent cyanosis by keeping the child warm, decreasing activity, and feeding small, frequent meals.
• Notify your child's doctor when a blue spell happens.

Getting your child to eat enough

Nutrition is very important for children who have congenital heart defects. Getting your child to eat right can be a challenge. Children with congenital heart defects often tire when eating, so they eat less and may not get enough calories. Feeding may take longer than you expect.

To help overcome feeding difficulties or lack of weight gain:

• Learn to recognize your baby's first signs of hunger, such as fidgeting and sucking on a fist. This will help you to initiate feeding before your baby starts to cry. Your baby will have more energy to eat well if he or she isn't tired from crying.
• Use a soft, special nipple made for babies born early. These nipples make it is easier for your baby to get enough formula or breast milk if you bottle-feed.
• Burp your baby often, especially when using a bottle. Babies who have trouble sucking take in large amounts of air when they eat, which makes them feel full before they get enough formula or breast milk.
• Give smaller, more frequent, meals. Smaller meals do not require as much energy to eat or digest.

Giving medicines

Medicines to treat congenital heart defects are very strong and can be dangerous if they are not given correctly. It is important to know how to give your child's medicine safely.

If you are not comfortable giving medicine to your child, ask your doctor the following questions:

• If the baby spits out or throws up the medicine, do I give another dose?
• If a dose of medicine is missed, should I give an extra or a double dose?
• How soon after starting the medicine should I expect my child to start getting better?
• If the medicine is to be given 3 or 4 times a day, do I need to wake my child up at night for a dose of the medicine?
• Should I give the medicine with food? If my child refuses to take the medicine, is it okay to add the medicine to food or drink to get the child to take it?
• Can other medicines be given at the same time?
• What are the most common side effects of the medicine?

If you need to give more than one medicine, ask your health professional about having a home health nurse visit you. The nurse can set up a schedule for the medicines, show you how to store them, and help you become more comfortable giving them.

Family issues

Take care of yourself and your family as you learn to deal with a lifelong condition. You can:

• Talk to a counselor. It is 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 health professional.
• Join a support group. It is helpful to be in contact with organizations and people who can offer support and answer your questions as they arise.
• Allow yourself time to adjust. It can be difficult to accept that your child has a serious illness, and it is normal to worry about the effect the condition will have on your child's future.

Expenses can quickly multiply if your child's heart defect requires several hospital stays and tests. You may qualify for help from organizations such as the Crippled Children's Services or Medicaid. Talk with your health professional about a referral to a social worker or financial counselor who can help you.

Adults with congenital heart defects often have a variety of issues to consider, including:

• Pregnancy. If I get pregnant, will my child have a congenital heart defect too?
• Employment.
• Health and life insurance choices.
• Heart infection (endocarditis). Most people with congenital heart defects have a lifelong increased risk for endocarditis. They need to take excellent care of their teeth and any types of infections. They may need to take antibiotics before having certain dental and surgical procedures.
• Exercise restrictions. People who have cyanotic heart defects or aortic valve stenosis or even some repaired congenital heart defects may need to be careful about exercise. Some children who have a congenital heart defect will have an exercise stress test done by the time they are in school. Talk with a health professional before starting any exercise or sports program.

Adults and teens with congenital heart defects may have self-esteem issues because of how they look. They may have scars from repeated surgeries, 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. It is hard for children with serious heart defects to feel "normal."