Health Library

Congenital Heart Disease, Emotional and Family Issues

Many things impact how a child feels about having congenital (present at birth) heart disease, and how it affects them mentally and emotionally, including:

• The type of defect -- A congenital heart defect that needs only one surgery to repair versus one that requires many surgeries and periodic or constant medical care can cause different emotions.
• 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 their heart disease at an older age, after living a seemingly healthy life.
• The number of hospitalizations -- Children who need many tests and procedures, surgeries, and/or other hospitalizations because of their illness may feel angry, fearful, resentful or withdrawn.
• The current age of the child -- Younger children may have difficulty understanding their illness and may misinterpret the reasons for tests and surgeries. 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.
• Visibility of symptoms or treatments -- Surgery scars, cyanosis (blue coloring of the skin, lips and nail beds), or the need for medical therapies like oxygen or feeding tubes can make a child feel different from others and can affect self-esteem and body image.
• Other stressors-- Most families manage their heart care on top of other stressors like work and school demands, changes in family routines, or losses, and sometimes the stressors can feel like they pile on one another.
• Cultural factors—Different faiths, cultural backgrounds, and previous healthcare experiences can all affect how families and children feel about their diagnoses and treatment, and how they cope.
• Family dynamics -- A child's emotions can be affected by the way their family members cope with the illness, as well as other issues, like money, work and insurance problems the family may face, or siblings who are jealous of the extra attention the child with the heart defect may get because of their illness.

Often these stressors can impact how kids learn and perform in school. They may miss school for medical appointments, or have differences in how their brains process information, needing specialized support at school. The Neurodevelopmental Clinic through the Cincinnati Children’s Heart Institute can monitor and test early developmental and cognitive functioning for kids and advocate for the individualized supports children need to succeed at school.

Where to Find Support

Doctors, nurses, social workers, counselors, child life specialists, chaplains and other healthcare team members can offer guidance and recommendations for managing the many emotions and/or spiritual needs that may come with 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 events for children and their families. It often helps to talk to others in your situation, and for your child to experience activities with others who have the same disease.

The Heart Institute also now has a center specifically for supporting the mental health and wellbeing of people with congenital heart disease and their families. The Heart and Mind Wellbeing Center has a team of psychologists, social workers and child life specialists with expertise in helping children, their siblings and their caregivers cope with upcoming medical procedures and visits, and gain coping skills around worries and difficult emotions. It also provides a safe space for patients and families to talk about their experiences. You can ask your cardiologist for a referral or call 513-636-4432, option 1, to get more information on these programs.

Your child's cardiologist (or the staff at the hospital) can also give you more information about a support 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 medications and help with the specific needs of children with congenital heart disease.