What happens to children with a severe congenital heart defect between 6 years and adolescence?

Heart children take the same developmental steps and have the same needs as healthy children. Most heart children go to school as normal. They do not feel restricted and experience the highs and lows of friendships like healthy children. They are proud that they can learn to read, write, and calculate like other children.

Difficulties can arise when heart children are often absent due to hospitalization or are less physically fit.

The school system has shown that it helps to inform teachers, classmates, and their parents about the child's heart disease. This reduces anxiety and needless worries. At the same time, you can provide information about taking medication or how to deal with emergencies. A short summary can be of great help; this is best written simply, avoiding technical terms and covering the most important points such as the type of heart defect, key points about medication, and how to deal with an emergency. If necessary, a nurse can visit the school, for example to explain the use of oxygen. You can contact the school social counselling service or us via the contact link. We will be happy to help you.

As your child grows, so too do the demands of their school. A heart child can experience increasing difficulties with reading, writing, arithmetic, and the constantly increasing pace of work, periods of concentration, and memory. These demands may mean that a developmental-pediatric assessment is needed. Such an assessment provides a profile of the strengths and weaknesses of your child. This profile advises you as parents and your child’s teachers where your child might benefit from support and where their strengths lie.

Normally, social integration at school is successful. However, if your child finds it difficult to make friends, is alone during the break, or is bullied, a conversation with a teacher or specialist is highly recommended.

Puberty is a challenging time. This is especially true for heart children. As parents, you have to let go of your child and increasingly hand over responsibility. This is much more difficult if your child has a chronic illness. It is an important issue. Please do not be afraid to seek advice from specialists and to take courage and confidence from other parents. It is extremely important for the heart child to feel that they can take responsibility and go their own way.

Contact with children of the same age should be as normal as possible, but this also means that the adolescents may put themselves in danger. As parents, react with understanding and explain to your child why it is important, for example, to take medication regularly.

It is also important during your child’s adolescence to find a cardiologist who your child can consult when they become adult. Pediatric cardiologists and adult cardiologists work together closely, so your pediatric cardiologist will be happy to provide support.


Bea Latal (2016): Neurodevelopmental outcomes of the child with congenital heart disease. Clinics in Perinatology, 43:173–185