Many teens with congenital heart disease (CHD) do well in high school. Like all teens, people with CHD have strengths and challenges. During this stage, new school demands and growing independence can make some challenges more noticeable.
Common Challenges #
Some high-school age teens with CHD may experience:
Attention and Organization Difficulties
This may look like trouble paying attention, being easily distracted, impulsivity (acting before thinking), hyperactivity (always moving, as if driven by a motor), or problems with executive functioning.
Executive functioning involves skills related to planning, organizing, and being able to change plans when needed.
In high school, this may look like difficulty keeping track of assignments or planning ahead for tests and projects. Teens this age may be “consistently inconsistent” in their learning and performance from day to day.
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.
In high school, teens may be required to type on a computer. Some teens may have difficulty with this.
Challenges with Problem Solving or Memory
This may look like difficulty thinking through steps, remembering what to do next, learning new information, or remembering what they learned.
Academic Challenges
This can include learning disabilities in reading (dyslexia), math (dyscalcula), or writing (dysgraphia), or falling behind classmates.
Mental Health Concerns
Some teens may feel anxious, worried, or sad. You may notice avoiding new activities, discomfort with changes in routine, withdrawal, or strong emotional reactions.
Worries About Health
Some teens worry a lot about getting sick or fear 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).
Some children may also have trouble understanding, responding to, and asking for help in more complex social situations, such as bullying.
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.
Risky or Unhealthy Behaviors
Some teens may experiment with vaping, smoking, alcohol, drugs or risky sexual activity.
Challenges with Independence
This may include difficulty explaining their heart condition, taking daily medications on their own, or managing medical appointments
Learning to drive and getting around the community can be stressful or take longer for some teens.
How You Can Support Your Teen #
Support Growing Independence in Medical Care
Encourage teens to help manage their health care
Practice explaining their heart condition and naming their medications
Help them learn to refill medications and track appointments
Prepare for Medical Visits
Encourage teens to write down questions for their cardiologist such as:
Can I play sports?
Why do I need my medication?
Will I need another heart surgery?
Plan for the Transition to Adult Care
Start to identify adult providers, such as an adult cardiologist, or neuropsychologist if your current medical team does not see adults.
Use transition tools to help shift care from parent-led to teen-led over time
Stay Connected with Supports
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!
Communicate regularly with teachers to see if school supports (sometimes called accommodations) are needed. If your teen already has supports in school, you may consider including them in meetings with the school.
As teens prepare for adulthood, connecting with adult CHD communities can be helpful. Organizations like the Adult Congenital Heart Association and the Congenital Heart Initiative offer education, resources, and support for people living with CHD.
Promote Healthy Routines
Encourage regular sleep, balanced meals, and consistent daily habits
Set healthy limits on screen time
Encourage fun physical activities that are safe for your teen
Encourage activities your teen enjoys. This may include:
School clubs
Sports that are safe
Extracurricular activities
Social events with friends
Hobbies at home
Support Emotional Well-Being
Stay in close contact with your medical team
Revisit the need for support like counseling if your teen shows ongoing anxiety, depressive symptoms, or stress.
If you have concerns at any time, it is ok to ask questions and seek support. You know your child best, and your care team is there to help.
Looking Ahead: Life After High School #
High school is a time to begin thinking about what comes next. There is no single “right” path.
Some students with CHD choose college. Others choose trade school, technical programs, apprenticeships, , or enter the workforce directly. All of these paths can lead to meaningful and successful careers.
The most important step is choosing a path that fits your interests, strengths, health needs, and long-term goals.
Thinking About Careers and Your Heart Condition
When exploring careers or training programs, it can help to think about how your heart condition may fit with different work settings. This is not about limiting your goals. It is about planning ahead and making informed choices.
Some helpful questions to consider:
Does this job involve heavy physical labor, extreme heat or cold, or safety hazards?
Would long or unpredictable hours affect my energy level or ability to attend medical appointments?
Does this job offer employer-based health insurance?
- Are workplace accommodations available if I need them?
Workplace accommodations are changes or supports that help a person do their job safely and successfully. This may include schedule flexibility for medical appointments, modified tasks, or other adjustments.
Other things to consider:
A student with a pacemaker (a small device placed in the chest to help control heart rhythm) may want to speak with their cardiologist before choosing a job that involves welding or strong electromagnetic fields.
A student considering freelance or contract work may want to plan ahead for steady income and access to health insurance for ongoing medical care.
Exploring Post-Secondary Options
Education and training after high school, often called post-secondary education can take many forms, including:
Four-year colleges or universities
Community colleges
Trade or technical schools
Certificate programs
Apprenticeships
On-the-job training
Each option has different schedules, costs, physical demands, and benefits. It can be helpful to talk with family members, school counselors, healthcare providers, and transition specialists. These conversations can support thoughtful decision making.
Building Skills for Independence
No matter which path you choose, high school is a good time to practice skills that support independence.
These skills include:
Managing time and responsibilities
Understanding your health needs and medications
Communicating with teachers, employers, and healthcare providers
Learning about health insurance, resources, and workplace accommodations
Building these skills now can make future transitions smoother
A Reassuring Note
Choosing a future path is not a one-time decision. Plans can change, and that’s okay.
People with CHD can thrive in many careers with the right information, support, and planning. Asking questions early ensures that your goals align with both your personal interests and your long-term health.
Resources #
Neurodevelopment in CHD
Anxiety and Emotional Well-being
School Services
ADHD, Attention, and Executive Functioning
Learning Disabilities
Transition to Adult Healthcare
Got Transition
Canadian Congenital Heart Alliance Transition Tools
The Canadian Adult Congenital Heart (CACH) Network
International resources – Canada
Family and Community Resource Centre: Youth in Transition
Transition Checklist from Conquering CHD
Personal Health Passport from the Adult Congenital Heart Association
I Heart Change
ON TRAC
- Well On Your Way