Topic Overview

Caring for a child with a congenital heart defect can be challenging. The following tips may help you care for your child so that he or she is as healthy and comfortable as possible. These tips may also help you cope with the difficulties that parents often experience.

Caring for your child in the hospital

You and your child might take many trips to the hospital or doctor’s office for tests, procedures, or surgery.

It’s normal to be frightened and worried about your child being in the hospital. Ask questions about any procedures that you don’t understand or any special care that is needed. In general, try to be with your child as much as possible.

What to expect

While your child is in the hospital for surgery, treatment may involve:

• Receiving intravenous (IV) fluids until your child wakes up after surgery and can eat.
• Having oxygen levels in the blood measured with a pulse oximeter.
• Making adjustments to help make breathing easier. Your child may have the head of the bed or crib raised, be given oxygen (through a hood, tent, or face mask), or sometimes be given treatment with a breathing machine called a ventilator.
• Draining fluids from the chest after surgery. Pressures within the body also may be measured.

How to help

The following are tips to help your child while he or she is in the hospital:

• Take some of your child’s familiar things to the hospital. Favorite toys or blankets will help the child feel more at ease.
• If you cannot stay with the child, visit often.
• Take some pictures of the family. Place them where your child can easily see them. Talk about what is happening with other family members or sing favorite songs.
• Tell the nurses about your child’s habits, typical routines, and general preferences.
• Tell the nurses about any special words that your child may use to tell others what he or she needs.
• If your child is a newborn, hold and touch him or her often to promote bonding.
• As much as possible, help the hospital staff with your child’s care. Find out whether you will be responsible for any treatments at home. Take this time to learn how to do these treatments while the hospital staff is there to teach you.

Coping with oxygen problems

Some heart defects, called cyanotic defects, cause oxygen problems. This means that the child’s body isn’t getting a normal amount of oxygen. Children with cyanosis may have a bluish tint to the skin.

If your child has “blue spells”:

• Attempt to calm the child. This is the most important thing you can do.
• Try placing the child with his or her knees to the 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 don’t improve with a change in position. Oxygen is given by placing a small tube at the entrance to the nostrils. Your doctor will determine the proper amount of oxygen needed.
• Try to prevent the cyanosis by keeping your child warm, decreasing activity, and frequently feeding small meals.
• Notify your child’s doctor when a blue spell occurs.

Oxygen therapy

Your child may need extra oxygen at home. It is given through a small tube that rests at the entrance to your child’s nose. Oxygen can cause a fire to burn very rapidly, so no smoking or open flames are allowed in the room where oxygen is being used. The amount of oxygen will be prescribed by your child’s doctor. Don’t change the amount of oxygen you give your child without the advice of your doctor.

Giving medicine

Be sure you know how to give your child’s medicines safely. Heart medicines can be very strong, so they can be dangerous if they are not given correctly.

• Be sure you understand how much medicine to give and how to give it.
• If your child takes a blood thinner, be sure to get instructions about how to give this medicine safely. Blood thinners can cause serious bleeding problems.
• If you aren’t comfortable giving medicine to your child, ask a health professional to help you.
• A home health nurse can help. Talk to your doctor 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.

Giving a child medicine isn’t always easy. If you aren’t comfortable giving medicine to your child, ask your doctor or pharmacist 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 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?

Getting your child to eat well

Nutrition is very important for children who have 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.
• Tend to use more calories (have a higher metabolic rate) than other children.

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 begin 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 (premature infants). 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 breast milk or formula.
• Feed small, frequent meals. Smaller meals don’t require as much energy to eat or digest.

If you have difficulty preparing balanced meals, talk with a registered dietitian. Ask your doctor whether you should increase the number of calories in each meal.

Preventing infections

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. Good oral care can limit the growth of mouth bacteria that could get into the bloodstream and lead to infection. 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.

Make sure that your child gets all the recommended vaccines, which helps keep your child healthy. Make sure family members and people who are in close contact with your child also get recommended vaccines.

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 surgery, 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.

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.

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.