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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...

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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...

Comments that she went through a stage of blaming herself which recurs occasionally several years...

Age at interview: 3
Sex: Male
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I did go through a stage of thinking it was all my fault and I think everybody does. You know. First of all you think 'Why me?'  And then you think 'Why?' And you do start to think, you know, 'What's caused this?'  And then you start to think 'Well, it's my fault. I've done something wrong. I shouldn't have done this, I shouldn't have done that' and the hospital assure me that there's nothing that causes it. It, it just is one of those things that happens. And, I must admit after a while you do tend to get quite knowledgeable about the heart, you know, of how it works and this that and the other and when you realise all, you know, what's, what's involved with the heart you realise that it's absolutely fantastic that the number of children that have got a perfectly normal heart. 

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...

Explains that her daughter's heart defect was just bad luck and she did not see any benefits in...

Age at interview: 3
Sex: Male
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When we were in hospital that first time they did blood tests and did checking to see whether it was a chromosome problem, which it is often linked with. But there is no cause for her. And also they were able to tell us that it wasn't a link, there was no link with this and any other problems that were going to manifest themselves, as far as they could look for them anyway. So that was reassuring. And it's just bad luck, isn't it? It just happens to some people. So I certainly haven't poured over thinking about my pregnancy, thinking what have I done wrong? Certainly that would have, I'm sure that goes through people's minds, thinking what have I done wrong, what could I have done, how could I have prevented it? But these things happen and that's just the way it is. You can't change it; you're not going to prolong your life by worrying about it. You're not going to change the situation. 

 

Believes her daughter's heart defect happened for a reason and she didn't blame anyone for it.

Believes her daughter's heart defect happened for a reason and she didn't blame anyone for it.

Age at interview: 5
Sex: Male
Age at diagnosis: 2
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I have but to be honest I haven't dwelt on it. I really haven't dwelt on it. I feel that there was a reason that my daughter had this heart defect. I don't know why, I don't know whether, you know, in later life that she'll go on to be a support to somebody else who's had a heart disorder or what. I really don't know. So to be honest I haven't dwelt on it. I feel that there was a reason. I haven't thought about it, I haven't thought about, you know, is it something I did or, I just haven't put myself through that. I think, I think we've had to go through enough dealing with the situation that it would just have been an added emotion for me. And I didn't blame myself for anything and I didn't blame medical staff for not picking it up or anything. As I say before we did have a bit of an initial, 'Why was it not picked up?' But it wasn't the end and I certainly didn't dwell on 'What if I'd done this?' or whatever...

 

They started searching for a reason for their daughter's heart defect but were reassured when...

They started searching for a reason for their daughter's heart defect but were reassured when...

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Mother' And that night when we went in, I remember one of the doctors saying to me, before I even had the chance to think it, and I was starting to think it, he said, once we got her settled into the ward, he said, I want you to know, it not anything that you've done and it's not anything you've eaten or haven't eaten or anything you've done in your pregnancy that's caused this, this is what's called a congenital heart condition and it's just happened. That's all that's happened.

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...

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Comment that records from earlier generations do not give any indication of what had caused...

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Father' Well they do to the extent that you get to a stage when you realise that well it doesn't matter how much you worry about what, what if I'd done this instead, it, it's not going to change the situation you've got and you've just got to keep looking forward and try and give Caitlin the best, best life we can and you know make sure that anything she does or anything, if we found something that may have caused it then we've, we would make sure that information carried though with her. Other things that I suppose in our generation  you, our, our grandparents', parents' generation weren't as forthcoming about what, things that may have been genetic conditions, you know, like I know several of my grandmother's, my grandmother's children died very young but nobody recorded what, what it was. Well maybe it was something like that so I think now that things like this are recorded, three generations they can sort of go some way to stop it from happening. But you try not to dwell on it because you'd drive yourself mad and it's just look at what we've got and the fact that '

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.

 

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