Emotional and Family Issues
Many factors influence how a child feels about having congenital (present
at birth) heart disease, and how it affects him/her mentally and
emotionally, including the following:
- the type of defect
Different emotions may be experienced with a congenital heart defect
that requires one operation to repair versus one that requires many
operations and periodic or constant medical care.
- the age of the child when the heart defect was diagnosed
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/her heart
disease at an older age, after living a seemingly healthy life.
- the number of hospitalizations
Children who require many diagnostic tests and procedures,
surgeries, and/or other hospitalizations due to the nature of their
illness may feel angry, fearful, resentful, or withdrawn.
- the age of the child
Younger children may have difficulty understanding their illness and
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, and 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, and can affect
self-esteem and body-image.
- family dynamics
A child's emotions can be affected by the way his/her family members
cope with the illness, as well as other issues including the stress felt
by the family. Finances, work, and insurance problems the family may
face, or siblings who are jealous of the extra attention the child with
the heart defect may receive due to his/her illness, will all affect
your child's emotions.
Physicians, 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/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, physicians, respiratory therapists, and other medical
professionals who love having fun with the children in a camp setting, but
who are also able to give medications and help with special needs of
children with congenital heart disease.
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