Many children with congenital heart disease (CHD) do well in school and in daily life. Every child, regardless of whether they have CHD, has strengths and areas where they may need extra support. Below are some challenges that elementary school aged children with CHD may experience.
Common Challenges #
Some children with CHD may have:
Attention or Self-Control Difficulties
This may look like trouble paying attention, impulsivity (acting before thinking), hyperactivity (feeling very “busy”), or problems with executive functioning.
Executive functioning involves skills related to planning, organizing, and being able to change plans when needed.
Sometimes these challenges can be signs of attention-deficit/hyperactivity disorder (ADHD), which is a condition that affects attention and self-control and must be diagnosed by a professional.
Fine Motor and Handwriting Challenges
Handwriting may be messy or hard to read. Letters may be very large or spaced unevenly. Children may avoid handwriting tasks or may not show their work in math.
Challenges with Problem Solving or Memory
This may look like difficulty thinking through steps or remembering what to do next.
Academic Challenges
Some children may have learning disabilities or fall below grade level in certain subjects.
Feelings of Worry or Sadness
This may look like crying easily or wanting to stay close to a parent or caregiver
Worries About Health
Some children may fear getting sick or worry that something is wrong with their heart. This is sometimes called health anxiety
Social Challenges
Some children may have trouble making or keeping friends. They may also struggle with using social communication (called pragmatic language).
Pragmatic Language means using language in social ways, like understanding sarcasm or other people’s points of view.
This may look like: Difficulty understanding jokes or sarcasm, reading facial expressions or tone of voice, or seeing things from another person’s perspective (putting themself in someone else’s shoes)
Frequent Absences
Some children with CHD have to miss school more often because of doctor’s appointments, procedures, or illnesses.
Missing school affects learning, but can also impact a sense of belonging to a child’s school community. This connection is important in avoiding anxiety related to school or school refusal. Work with the school ahead of time when possible to make sure your child is able to make up any missed work and can maintain a connection to peers.
Children with CHD may have challenges in one, some, all, or none of these areas. If you have concerns, reach out to your medical team
How You Can Support Your Child #
Support Emotional Well-Being
A psychologist can help your child learn to understand and cope with their feelings. If possible, look for someone who has experience supporting children with long-term medical conditions. Your child’s cardiologist or pediatrician may be able to help you find a provider.
Continue Developmental Follow-Up
Many children’s hospitals have developmental follow up programs specifically for children with CHD. Keep appointments with your child’s development follow up program – even if they seem like they are doing ok!
Stay in Close Contact with Teachers
Talk regularly with school staff about your child’s progress and needs. You may request an evaluation for individualized learning plan for your child if support is not already in place. In the United States, these are often referred to as IEPs or 504 plans.
Support Healthy Routines
Encourage regular sleep, balanced meals, and consistent daily habits
Limit screen time
Encourage fun physical activities that are safe for your child
Encourage activities your child enjoys. This may include:
- school clubs
- sports that are safe
- extracurricular activities
- play dates
- hobbies at home.
Stay Connected to Your Medical Team
Talk with your child’s care team about developmental progress. Adjust therapy and supports as needed.
Looking ahead #
As your child gets closer to middle school, help them practice independence in small steps.
Encourage them to:
- Complete school work and simple chores
- Use checklists, visuals or planners to keep track of tasks
These skills can make the move to middle school feel smoother and more manageable.