Parents of children with congenital heart disease

How congenital heart disease affects a child's quality of life may be influenced to a lesser or greater extent by the type of heart defect, the treatments and medication, whether it has been corrected or a child needs ongoing treatment. Studies of older children suggest that in some cases their physical abilities are considerably impaired, but they develop strategies to cope with their limitations.

Here we talk about parent's views of their child's quality of life in early childhood. Studies of older children suggest that parent's perceptions of their child's quality of life are sometimes not always in tune with the child's perspective. A few children had other health problems such as epilepsy and asthma, which limited their abilities.

Many of the parents we interviewed had noticed that before the operation their child's symptoms became worse and that this affected their quality of life, but after surgery they saw an improvement in their physical abilities. After surgery, it is usually necessary to take medicines in the short or longer term, for example warfarin, which can impact on quality of life.

Many parents of children who'd had corrective surgery, or had a less severe heart disorder, described their children as being full of energy and living normal lives, just like any other child. A few said that people would never know there was anything wrong with them. One mother said her son, who had never been very energetic, had gone skiing for the first time in his life after he had a pacemaker implanted (see Pacemakers and Interview 24). 

Another whose 5-year-old daughter had a balloon catheter operation to correct pulmonary stenosis says she shows no limitations and goes to tennis lessons, swimming lessons and dancing every week.

Some children did have limitations. Some became breathless easily and found it difficult to walk very far or climb the stairs at home. One mother said that her 3-year-old son needs to be in a pushchair when they go out. Another couple, whose 5-year-old was too breathless to walk to the park and play have had their back garden redesigned so that he could play at home.

Some were prone to frequent, and severe, colds or chest infections in the winter months and had difficulty getting rid of them. A couple of older children had an annual flu vaccine injection.

Some older children had problems with physical education (PE). One mother of an 8-year-old boy with hypertrophic cardiomyopathy said that PE was difficult for him because when he was feeling well he wanted to join in the races and became very competitive but strenuous exercise was a risk to his life.

Another whose son had a severe heart condition describes how he had been helped to run and had come first in the race at the school sports day, which had boosted his confidence.

Other parents had noticed that their toddler was becoming more aware of not being able to do the same things as their peers. A few mothers found it hard to cope with their child's sadness at realising their limitations. However, the mother of one child said he would rest when he needed to and then carry on playing. She would focus her child's energies on other non-physical activities and tried not to let him feel he was missing out (see 'How it affects daily life' and 'Coping').

Children with a heart defect need to be particularly careful about looking after their teeth to prevent endocarditis. They need to take antibiotics before any type of surgery, for example, having a tooth out.

Children with severe heart conditions had greater limitations. One couple said their 3-year-old gets out of breath easily, has poor circulation, can't walk far, has to avoid accidents because he is on warfarin and cannot get insurance for foreign holidays. Despite this, they said his quality of life was good compared with the bleak outlook they were given at diagnosis.

Another mother explains that even though her son had a serious heart condition and was very ill at times, he was always smiling and happy and had a good quality of life.

Several parents remarked that their toddlers were very sociable, happy and confident. One mother explains that her 5-year-old son who has a complex heart condition has plenty of energy, is very outgoing and can stand up for himself at school. One mother said that a few months following his pacemaker operation, her son was conscious of where it was in his body and nervous about getting knocked in the playground. Another couple had noticed that their 5-year-old was suspicious of strangers, which they attributed to all the tests and treatments he had undergone.

Scars from open-heart surgery often heal well. Some children were sensitive about them for a few months after the operation but most were too young to feel very conscious about them. One mother describes her son proudly showing off his scar to everybody when he was around at a friend's house for tea.

 

Last reviewed July 2018.