Emotional and Family Issues in Children with Heart Disease
Many things influence 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. Other defects
require surgery or multiple surgeries and ongoing medical care.
The child's age at diagnosis. A child who was diagnosed at birth and who has grown
up with the heart defect may adjust differently than a child who learns of his or
her heart disease at an older age.
The number of hospitalizations. Children who need many tests and procedures, surgeries,
or hospitalizations may feel angry, fearful, resentful, or withdrawn.
The age of the child. Younger children may have trouble understanding their illness.
They may misinterpret the reasons for tests and surgical procedures. Whereas, older
children can better understand information about their illness and what it will take
to make them well.
The coping skills and temperament of the child. Some children can deal with adversity
better than others. Some children are more nervous or anxious than others.
Body image. Surgical scars, cyanosis (blue coloring of the skin, lips, and nailbeds),
or the need for medical therapies, such as oxygen or feeding tubes, often make a child
feel different from others. These can affect self-esteem and body-image.
Family dynamics. A child's emotions can be affected by the way his or her family members
cope with the illness. Stress felt by the family caused by finances, work, and insurance
problems can affect how your child copes. Siblings who are jealous of the extra attention
the child with the heart defect may get may also affect your child's emotions.
Doctors, nurses, social workers, counselors, and other healthcare team members can
provide guidance and recommendations for managing the many emotions that may accompany
a chronic disease. They may also recommend community services and local support groups.
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 to others in your situation, and for your child to experience
activities with others that are like him or her. Your child's cardiologist (or the
staff at the hospital) can give you more information about a group in your area.
Be sure to also ask about special camps that have been created for children with congenital
heart disease to help them interact with each other and have fun. Many of the volunteer
counselors at these camps are nurses, doctors, respiratory therapists, and other medical
professionals who love having fun with the children in a camp setting, but who are
also able to give medicines and help with special needs of children with congenital