Many things affect how a child feels about having congenital heart disease. Some of these factors include:
The type of defect. Some defects get better on their own with time. Others need surgery. Or they need many surgeries and ongoing care.
The child's age at diagnosis. A child who was diagnosed at birth and grown up with a heart defect may adjust differently than a child who learns of his or her heart disease at an older age.
The number of hospitalizations. Some children need many tests and procedures, surgeries, or hospitalizations. They may feel angry, fearful, resentful, or withdrawn.
The child's age. Younger children may have trouble understanding their illness. They may not know the reasons for tests and surgeries. Older children can better understand their illness and what it will take to make them well.
The child's coping skills and attitude. Some children can deal with hard times better than others. Some children are more nervous or anxious than others.
Body image. A child may have physical changes that make them feel different from others. This can affect their self-esteem and body image. These include:
Blue coloring of the skin, lips, and nailbeds (cyanosis)
Needing oxygen tubes, feeding tubes, or other medical therapies
Family dynamics. A child's emotions can be affected by the way family members cope with the illness. The family may feel stress due to money, work, and insurance problems. This can affect how your child copes. Siblings may be jealous of the extra attention given to the child with the heart defect. This may also affect his or her feelings.
Ask your child's doctors, nurses, social workers, counselors, and other healthcare team members for guidance. They can advise how to manage the many feelings that go along with a chronic disease. They may also advise you on community services, local support groups, and special camps.
Local support groups are made up of children with congenital heart disease and their families. Ask about meetings, outings, and parties for children and their families. It often helps to talk with other parents in the same situation. It's also helpful for your child to do things with other kids that are like him or her. Your child's healthcare team members can give you more information about a group in your area.
Also ask the healthcare team about special camps for children with congenital heart disease. These camps help the kids have fun together. Many volunteer counselors at these camps are nurses, doctors, respiratory therapists, and other healthcare providers. They have fun with the kids in a camp setting. But they can also give medicines and help with the children's special needs.