Parents of children with congenital heart disease

Ideas about the causes of congenital heart disease

Congenital heart disease is one of the most common types of birth defect, affecting up to 8 in every 1,000 babies born in the UK (NHS Choices June 2018 Some congenital heart defects are genetic (they can be passed on from a parent to a child through the genes), for example, hypertrophic cardiomyopathy and Di George syndrome.

The causes of other types of congenital heart defect are not known. Some circumstances which may increase the risk of having a baby with a heart condition are: if the baby has Down's syndrome, if the mother has rubella (German measles) or other viral infections during the first three months of pregnancy, the mother had poorly controlled diabetes or the mother was taking certain medications while pregnant (anticoagulants or antiepileptics).

Many parents wanted to know why their child was born with a congenital heart defect, but often that question could not be answered.

Some parents we interviewed had been told that their child's heart condition was genetic. One mother who has hypertrophic cardiomyopathy felt very guilty when she found out her son also had the condition.

Many parents were told by their doctors that there was no known cause; it was just something that happened. Even when they accepted this, parents often searched for an answer for a while, believing there was something they could have done differently.

Many mothers had reflected on their pregnancy and wondered if there was something they had done to cause their child's heart condition. Often, mothers wondered if medicines they had taken, something they ate or drank when they didn't realise they were pregnant, not taking enough rest or flying abroad early on in pregnancy could have caused their child's heart condition. One mother wondered if the rash she had all over her body when she was six weeks pregnant could have been a cause. Some fathers questioned if it was the materials they had been in contact with at work.

One mother commented that when her child came home after surgery she was consumed with guilt that she had caused her son's heart condition and it was only when she started to read information about congenital heart disease and found out it was more common than she realised that she stopped blaming herself.

Although several mothers said feelings of guilt had disappeared at birth, or as their child got older; some said they occasionally recurred several years after their child was born (see Interview 14). 

Other parents were philosophical, believed it was something that had just happened and chose not to dwell on it, or were reassured when their doctor told them it was nothing they had done.

Several parents said that they tried not to speculate on what might have been the cause of their child's heart defect but to focus on the future.

Last reviewed July 2018.

Last updated July 2018.

 

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