Most children with heart disorders have a congenital condition which means that the disorder has been present since birth.

Although about half of these children will need an operation to improve their condition, some defects will correct themselves, whilst others are relatively minor and do not cause any great problems. Heart disease may be acquired as a result of rheumatic fever, but this is rare.

Because there is a huge range of degree and complexity in congenital heart conditions, each child is different in how he or she is affected and what they can or cannot do. Most children can lead ordinary lives, and can be allowed to limit their own activities without restraint from an adult. They need to learn to become independent and to understand and deal with their own condition.

Some children will be taking medicine. Most medicines have no obvious effects at school. However, if a child is taking medicine to help their body get rid of excess fluid, they will probably need more frequent and possibly more urgent trips to the toilet. Children who are in danger from blood clots take blood-thinning medicines, which prevent them from taking part in contact sports.

Key characteristics

Children with heart disorders may:

  • have poor physical development
  • tire more quickly than other children
  • need to limit the extent of their physical activity
  • exhibit rapid breathing
  • become breathless and, in some cases, their lips and skin may become blue
  • have a lower tolerance to cold weather than other children (mainly because they cannot run around frequently to keep warm)
  • have more severe reactions than other children to common infections like colds
  • have more frequent absences than other children because of illness
  • have some attention and concentration problems
  • have difficulties with appetite and eating
  • need support with self-help skills, and encouragement to become as independent as possible.

Support strategies

You may need to:

  • have regular liaison with parents to ensure that all medical needs are being met at school
  • liaise with hospital and home tuition services when necessary
  • encourage classmates to keep in touch when children are in hospital through cards, letters, jokes, photographs, etc.
  • make flexible arrangements for PE lessons and for playtimes if necessary
  • use a buddy system for rest times
  • make use of circletime to talk about problems or, if preferred, offer the support of an adult mentor
  • ensure that appropriate adult support is provided when necessary
  • provide an adult mentor with whom the child may discuss
  • anxieties and frustrations
  • encourage participation in all school activities where possible
  • ensure that extra time is given for specific tasks
  • inform all staff about the child’s conditions and alert them to symptoms which would indicate a potentially serious situation
  • contact parents and call an ambulance if the child’s condition suddenly deteriorates.

Support agencies

Children’s Heart Federation