Behaviour changes and congenital heart disease

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If your child has a heart condition, you may notice changes in their behaviour or that they display behavioural problems from time to time.

Key points

  • If your child has a heart condition and you are concerned about their behaviour, their doctor, nurse, social worker, or a child psychiatrist can work to find and address the cause of the behaviour.

This page explains why a child with congenital heart disease may display behavioural problems.

Effects of congenital health disease on behaviour

Younger children with CHD may exhibit some behavioural problems and may "act out" or do things that are out of character. Evidence indicates that children of parents who are very stressed by the child's problems are more likely to have behaviour problems. This is especially true if the family has inadequate social support (which also relates with stress level).

Some studies have also shown that behaviour problems are more common in children who had repeat surgeries or those children who underwent complex surgery.

With appropriate support, many children who have a serious illness learn to adjust to their situation over time. But like adults, children have good days and bad days. If your child is having a bad day, it may be hard to tell whether the cause is the heart condition, the treatment, or your child just being a child. Crying, anger, fussiness, acting out, tantrums, or withdrawing can all be normal behaviours for children of certain ages at different times. Some children may have more serious behaviours problems, such as becoming depressed, anxious, not sleeping well, having problems with relationships or in school, or refusing treatment. More serious behaviour changes should be attended to by a professional. Talk to your doctor or health care provider if you are concerned.

What can be done about changes in behaviour

Talk to your child’s doctor, nurse, social worker, or child psychiatrist if you are concerned about their behaviour. They may be able to help you find the cause of the behaviour, and develop a solution. There are several approaches you can take at home to reduce problem behaviours.

  • Stick to a routine as much as possible. Although a child’s life may have become unpredictable, keeping to routines as much as possible will help because children thrive on routine. Develop a strategy to deal with inappropriate behaviour. For example, help your child find alternative ways to express their negative feelings or behaviours (such as art, writing, music, fresh air, time out). In some situations, ignoring the behaviour may be the best strategy. Too much attention can cause negative behaviours to increase.
  • Reward good behaviour when you see it. A reward could be special time set aside with parents.
  • React to inappropriate behaviour with consequences that are suitable for your child’s age or development. The response should be prompt, consistent, and clear.

The child with tetralogy of Fallot

Tetralogy of Fallot is a common type of defect among patients with CHD of all ages, and it is a condition that requires life-long medical surveillance. In general, children with tetralogy of Fallot show memory functioning within the average range. Studies have also found that in this group children have poor attention skills. As children with tetralogy of Fallot grow into adulthood, their health care provider must monitor for supraventricular arrhythmias and endocarditis – both conditions more prevalent in adult patients.

Last updated: December 14th 2009