Heart Institute Encyclopedia

Emotional and Family Issues Related to Children with Congenital Heart Disease

Many factors influence how a child feels about having congenital heart disease (present at birth), and how it affects him or her mentally and emotionally, including:

  • 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surgeries, and / or other hospitalizations due to the nature of their illness may feel angry, fearful, resentful, or withdrawn.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 nail beds), 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.

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Last Updated: 10/2011