Finding Community with a Congenital Heart Defect

Humans are naturally social animals, and nearly everyone wants to have meaningful relationships, and to be part of a group. People do better when they feel seen, appreciated, and celebrated, when they share love and care with others, and when they have a place to belong.

People with heart defects have the same social needs as anyone else, but are less likely to have their social needs met. Young people with heart defects are more likely than other young people to feel isolated, to have trouble making friends, and to be lonely.

When people with heart defects have strong social supports, these supports can help them to stay happy and healthy over time. So, finding a community is an important intervention for long-term emotional and physical health.

People with heart defects sometimes have a hard time finding a community and building a strong social network.

This can be because:

• they feel different from others their age

• they do not enjoy the same activities other people enjoy

• they have restrictions or limitations and cannot do many of the things other people do

• they have challenges with social skills or social communication

• they have reduced or uneven thinking skills, and have trouble finding peers who are similar

• they are often at home or in the hospital and so they miss school or events

• other people see them as different, and do not try to be friends

• they have unusual interests and hobbies, or their interests and hobbies are more typical of younger people

• they are afraid of social situations, and are scared of being judged or embarrassed

• they do not feel comfortable going places without a parent

• they have autism spectrum disorder (ASD) and are not very interested in having friendships, or have a lot of trouble navigating social situations

• they have depression and are not motivated to seek out other people

If a person is struggling to connect with others, it can be helpful to figure out where the problem is stemming from. Knowing the source of the problem can help to identify an appropriate intervention.

Luckily, interventions can help people to make connections, establish relationships, and find their place within a community. Depending on the person and their needs and goals, helpful services could include:

• Speech and Language Therapy (from school or a clinic) to work on social language and social situations

• Occupational Therapy (OT) (from school or a clinic)

• Social Skills Training (from school or a clinic, often with a psychologist, social worker, or mental health counselor)

• Psychotherapy (from school or a clinic, with a psychologist, social worker, or mental health counselor)

• Social Skills Training (at school or in a clinic)

Other helpful strategies can include:

• connecting with a local congenital heart disease advocacy group, and finding other people the same age with similar experiences

• asking the medical team for support groups or social opportunities with other young people with heart defects

• researching clubs, groups, and teams in the community, including at school, at the library, at recreation centers, and through a parks and recreation department

• researching activities for young people with disabilities in the community, including Best Buddies and Special Olympics

• attending a disease-specific heart defect camp

• attending heart defect-themed events in the community

If families are concerned about their or their child's level of social engagement, they can talk with their doctor, psychologist, school team, and/or cardiac neurodevelopmental care team. The world is wide, and there's a place in it for everyone.

This content was reviewed by a psychologist at Boston Children's Hospital.

Developmental care is best when it is local. Families local to Boston can receive care from the Cardiac Neurodevelopmental Program (CNP). Families from other regions can use the link below to find their local care team.