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.
Comments that Wolff-Parkinson-White syndrome, a heart defect had not been identified in her...
Yeah, I do, I do blame myself. I don't know why. Because we, we, me and my partner both had ECGs to test that we weren't Wolff-Parkinson-White, and it just hadn't been picked up*. Because then I started saying 'Well I get palpitations'. But I think it; I think everyone gets palpitations at some point. Yeah, I, you know, I don't know why I think, just sort of seeing him so ill. Yeah, I do blame myself and I know that I shouldn't because, you know, even if it is, was in my family that's not my fault. So it's totally irrational. I sort of thought, 'Oh, I fell down the stairs. Did I start something off but you know there's no way, you know the doctors have told me there is absolutely no way that anything I, you know, it's a, a hereditary, it's, it runs in families. It doesn't have to be direct, a direct line but, you know, it's very common in families. It's just weird that it is not anywhere else in my family.
*Wolff-Parkinson-White syndrome is not a genetic condition but occasionally more than one person in a family may have it.
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.
Comments that she went through a stage of blaming herself which recurs occasionally several years...
But it still goes through my mind sometimes, why. But the hospital assure me that I didn't do anything wrong, it's just one of those things that happen. Sometimes, you know, these things do go wrong and, you know, the heart doesn't develop. I mean, as I say, Sam has no spleen either. He has a saddle liver which means the liver is larger than it should be. His appendix were in the wrong place, so, and he had the mal-rotation of the gut. So he had all these different things and you think 'Well, you know, why'd that all go so wrong?' But as far as I've been told and as far as I know in my mind it just does. It's just something that happens sometimes. You know, and so he's not perfect, you know. But there is still a niggling little thing I suppose in the back of my mind that was it something I did but I think you have to just really snub that out because it could eat you away and there is, as far as I know, no reason for it, It's just unfortunately sometimes that does happen.
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.
Explains that her daughter's heart defect was just bad luck and she did not see any benefits in...
Believes her daughter's heart defect happened for a reason and she didn't blame anyone for it.
They started searching for a reason for their daughter's heart defect but were reassured when...
Father' The luck of the draw.
Mother' And I felt quite relieved then 'cos that was starting in the panic, that was starting to you know, what's happened, how's this happened, what could we have done and I thought that was very reassuring.
Father' You, you for a short period of time you were searching for you know, something, not something or somebody to blame but you were searching for solution. [Mother' A reason, yeah] yeah a reason behind it and what could we have done differently. Then time and time again you know, you have it given back to you that's there's nothing that you can do. It's you know, done now anyway. But it's certainly nothing that you could have actually changed to make it any different.
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.
Comment that records from earlier generations do not give any indication of what had caused...
Mother' There is no answer, is there? [Father' Yeah] And it's, and I don't think you can spend too long speculating on what you've done in the past but just really concentrate on the future and the future of her life and your family.
Last reviewed July 2018.
Last updated July 2018.