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.
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:
How to help
The following are tips to help your child while he or she is in the hospital:
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":
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.
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.
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:
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:
To help overcome feeding difficulties or lack of weight gain:
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.
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.
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."
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.
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:
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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