Parents of children with congenital heart disease

When parents plan a family they hope and expect to have normal healthy children. The birth of a child with a disability entails a major change in their daily life and their prospects for the future.

While many parents were still facing uncertainty and future operations, others whose child had already had successful corrective surgery felt the worst was behind them and could be positive about the future. All however had had to find a way to adapt to and cope with their child's illness.

Parents had to cope with uncertainty about their child's future. One mother had learnt to accept that it is impossible to predict what might happen in the future for her son who has hypertrophic cardiomyopathy. Parents of one child who would need further operations said they coped by not dwelling too much on the future and taking each day as it came. Another mother described how she had days when she had negative thoughts but tried to push them to the back of her mind. Many were optimistic that paediatric heart surgery would continue to progress and new treatments would be available in five or ten years.

The mother of a child who had had successful corrective surgery describes feeling positive about the future. One couple said they now felt able to plan the future. Another mother said she still found it hard to make any plans. One mother of a child aged 12 who had surgery as a baby and needed no more treatment explains that apart from check-ups and occasional worries over the years, it was now a distant memory.

One couple whose son still had to have his first operation had fears for the future, which made them aware of the importance of enjoying what they had.

Parents said they had become more confident and it had become easier to cope as their child got older. Although many had gone through a roller-coaster ride of emotions, they had found that they could cope. One mother said that the worst thing had been getting the diagnosis and nothing they had to face in the future would compare with the emotions they experienced that day.

Some parents also had to cope with comments from other people about their child's size or development. One mother said that comments from people that her son's development was slower than children the same age used to make her upset and angry. Another had found it helped to have confidence herself about the reasons for her daughter being small.

Parents described how they decided to make their child's home life as normal as possible. One couple tried to do this between hospital appointments. Although they experienced a multitude of emotions when their child had another operation, as soon as they were home they tried to make their family life as normal as possible.

Another couple tried to focus on their child first and the heart condition second, which was difficult to do at first. Several said it was important not to treat their child as disabled, not to be over protective, or to treat them differently because of their heart condition. Sometimes fathers found this easier to do than mothers. One mother of a child with hypertrophic cardiomyopathy said she found it difficult as a parent to know if she was getting the balance right.

Some parents said although they didn't overprotect their child, they still looked out for symptoms and signs and had occasional worries (see Interview 21). One couple try to focus on the positive things their 3-year-old could do (see Interview 08).

 

Last reviewed July 2018.