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Parents of children with congenital heart disease

Coping when a child has 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.

 

Coming to terms with uncertainty is difficult for parents.

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Age at interview: 3
Sex: Male
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When the baby's newborn, in the first year of that baby's life, that is the most traumatic time because as the time goes on you become a lot more confident that things are going to be OK. Because all you want is for the doctor or the nurse to say to you 'Everything's going to be all right. Your baby's going to live and the operation's going to be successful'. And they can't say that. And that's all you want them to say. That you just want that certainty. But even now they can't, they can't give you that certainty which again is one of the hardest things to cope with, having a cardiac baby. They can't say to me 'When Daniel reaches 10 he's going to be absolutely fine' because they won't know. You have to, you have to grow with it, you have to accept it, you have to live with it. It's something that they can't tell you is going to be all right. And anything, as each stage passes you do become more confident.

 

She has learnt to accept that it is not possible to predict what might happen in the future for...

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Age at interview: 8
Sex: Male
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I mean you have to accept the things that you can't do anything about and that's, you know, I've gotten to a stage where I can do that now. You know, once you get kind of past the anger you just have to accept the way things are, life is unpredictable. And even if we didn't have this condition in our family you don't know what's going to happen from day to day anyway. So I just try to think that every human being has things to deal with, you know, whether it's health things or emotional things. I mean nobody gets away with a completely easy life and I, I just try to remember that and, you know, cope with it that way. There's nothing I can do about the uncertainty and so I just, I hope, I hope for the best. And I hope that research brings better treatments and I hope that by the time my son starts having real difficulties that there'll be more that they can do.
 
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Her son may need a heart transplant in the future but she tries not to worry about it too much...

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Age at interview: 7
Sex: Male
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As for the future, it's very, very difficult for them to tell us at the moment. The, the kind of surgery that they're doing now is so innovative that they don't have people 10 years down the line, 20 years down the line and they can say, 'Look, you know, this is what you can expect'. 

For Thomas we do know that there's a possibility that he may need a heart transplant in the future, if he doesn't thrive. What they've done now is as far as they can go with palliative surgery. If he weren't thriving then the next step would be a transplant but, to be honest we don't' worry about that too much because who knows what they'll be able to do in the next 5 or 10 years. And at the moment, he has a wonderful life and he's just like all the other children. So, what more can you ask for really?

 

Explains that every now and then she has negative thoughts about the future but she tries not to...

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Age at interview: 3
Sex: Male
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She's had the corrective operation and she's doing really well. She's got future operations to come, we know that, and we know that they're not without risk. Between operations we try to ignore the operations as best we can, a sort of coping mechanism as much as anything else. Every now and then you do get the negative thoughts, though. The kind of what is going to happen? At the beginning we were told that she'd have normal life expectancy, she's probably be able to have children, you know there's nothing about her heart that would mean she wouldn't be able to have children, have a normal life.  

Every now and then somebody says something that you think, maybe that's not true or maybe that's changed or maybe that won't be the case for her. How much that that's different from other children and thinking about them maybe getting run over by buses or maybe getting a childhood cancer or whatever else, I don't know. It's just because you've got something to focus your anxieties as a parent on, perhaps. But I do think what happens if one of the operations in the future goes wrong? What happens when, she's got an artificial bit, a bit of tubing in and when that gets replaced what happens if it doesn't work, what happens if' And you can always live a 'what if life' but when I think about it, you know I think about it a bit and pray about it and then I leave it and move on. But yes, those thoughts do happen and do occur and I think everybody, well I know all the people I've talked to have similar doubts and questions and worries about the future. But if you think about it in the cold light of day when you're not having one, other people, well you have the same worries about healthy children, it's just that you've got something to focus your worries on, the fact that they've got a heart problem. And it doesn't help them or you to get on with life to focus on that so it's much better in the long run to take every day at a time. You don't improve your life by worrying about what is going to come tomorrow.

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.

 

After her daughter's correctives surgery she feels very positive about the future.

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Sex: Female
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Very, very positively. I know that she's going to need follow up and I know that she does still have a small lesion/hole there so she's going to have to, always have to be careful. We have to make sure that we tell the dentist, every time we go because if we ever do, if she has any procedures done it's important that they know so that she can get antibiotics. There are small kind of things but in general I'm optimistic. I hope the hole will stay the same size or get smaller so she doesn't need another procedure but even if she does need another procedure, it's not likely to be anywhere near as dangerous and risky as the one she's already had so, fingers crossed that, she might not need anything doing and, and the future's very positive.
 

Although it was awful at the time, and occasionally she has had worries about her daughters...

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Age at interview: 12
Sex: Male
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Now, that's something that, that perhaps I could say to parents that no matter how awful it is now time does put it in perspective. We, we were fortunate in that her surgery was done and dusted and we have we've walked away from it all but for blips and check ups. You know, I'm sure there are parents who would long for that but time heals. There's nothing like a platitude is there?

And both my husband and I, I think we supported each other in that she's mended, she's sorted, it's done, it's dusted, and I think that's the only way to be isn't it, perhaps because it was. You can't wait, I worry occasionally, once in a blue moon. It happens, when there was this article about  fertility and problems and with children who'd had soya milk, I thought, 'Oh god', you know, so that sort of kicks it up and puts it into focus again. I wonder what it would be like for her having children, you know if that's going to be a problem. We were told that that the stitches, there can be some narrowing of the vessel, the blood vessels where the stitch, stitches are. And I was slightly anxious occasionally. When sort of around nine, ten, eleven, I suppose, when she was growing quite quickly, if she ever got a bug, then I think, 'Oh you know, is she all right?' I think that you think it's just another thing. So I suppose it's just another ornament on the shelf, you know it's there but you don't really, it's part and parcel of her, really. But don't worry about it over much at all, just let her, you know, carry on regardless.

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.

 

Their son has still to have his first operation and they feel uncertain about the future but cope...

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Sex: Male
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Father' It's a little bit uncertain really isn't it? Yeah, it really is with regard, with regard to him. Yes. I don't know its hard like, generally I'm fine and then if I start thinking about it I just start thinking about long term and then it all really becomes a little bit hazy, a little bit uncertain. Yeah so upsetting really but on a day to day, basically its just a day to day level that we go by really you know and its fine, its great, he's at home, he's running around and personally I just feel really, really glad that he hasn't had to sort of have any operations yet and he's still pre-op and he's at home. And we've, we spend quite a lot of time with him and we go on holiday and just enjoy him. It's been really nice. But then when I start thinking long term about post-op and, and what he's going to have to go through then that's quite upsetting. And I do bear that in mind with things like you know like, I've never mentally settled in [the city] because I always think eventually we're going to have to move closer to family because he's going to have to have his operation [another city] which is where my family is, just because that's where the support will be.

So it has had quite an impact on you?

Father' Yeah, yeah but as I say on a day to day level its fine.  Yeah, its really good, I've enjoyed having him here.

Mother' I think for me one of the hardest things was, before he was born, talking to one of the parents and actually saying that we have been told that our child is going to have, is not going to have a life expectancy beyond 30. And to think about that was quite sort of overwhelming. And when I asked the consultant that, he wasn't able to give a very straightforward answer to that. The research that's been done only kind of has been done for children who've had surgery and then fifteen years after that surgery. And so that's quite hard. At another level I think one of the ways in which I think I've learnt to cope with it is to live for the day much more and I think that's what I just really, really enjoy doing and I'm just enjoying doing more and more, spending time doing the little things and kind of planning things and trying to get as much in as I can really to enjoy him as much as I can. Because he's just, he's just brilliant really, he's got a fantastic sense of humour and he's really witty and funny and he and [our daughter] are just absolutely brilliant together as well.

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.

 

She found that life is better than she thought it would be and that she could cope.

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Sex: Male
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When he was first born, those first few weeks, I should imagine you never thought at that point that you would be able to say now ....

Never.

That life is.....

Pretty normal. Never.  Never, never.

I did, I thought he was going to die, you know. At one point, I actually thought he was dead when I got to the hospital. Just because of the colour of him and the way he was, he was sedated but he looked, you know, he looked awful. And you don't think, not that you think of the future then but, you know, to what he is now, we're no different from any other mum with a sixteen month old baby. You know we still have the sleepless nights  through teething. We still have all them things. Which is good, you know. I actually enjoy that because I think 'Cor, you know, I could so easily not have him'. Had they left me for another couple of days and not given me a caesarean, you know, things could be different. You just don't know. I mean luckily when you get to that stage of your pregnancy they're checking you every week or every two weeks so you don't go any length of time anyway. And they have got knowledge about it even though Wolff Parkinson White doesn't come up that frequently, it's not unknown to them so it is diagnosable.

Yeah, life now I'd say is, you know, the same as what it would be had this not had happened to me. You can't, I couldn't see it then at all. I couldn't. If I'd have thought I'd be talking to you then, I wouldn't have been able to. I would have sort of said 'No, it's too bad It's, you know, and it isn't, it isn't.

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.

 

She used to get comments from people that her son's development was slower than children the same...

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Sex: Male
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Lots of instances where people have said things. I used to get, 'cos Luke didn't sit up until he was 9 months old 'Oh, isn't he sitting up yet? Oh, my kid's the same age and they're crawling'. And then there was one time when Luke had been in hospital and he'd been very poorly and we'd gone to a Christmas fair and I'd seen a lady who'd had a child a couple of months after Luke and she said 'Oh isn't Luke walking?  Oh my daughter's been walking for months'. Well her daughter was a healthy little girl, not got Luke's problems. And it used to really upset me. It used to make me really angry and I used to get very upset and I just used to say 'Oh no', but while the other children was playing and running and wanting to walk and things Luke was basically fighting to live on a day-to-day basis without having to worry. That was the last thing. But it didn't matter to me that Luke didn't walk. 

 
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People used to comment on her daughter's small size and she found it helped to have confidence...

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Age at interview: 3
Sex: Male
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Yes, sometimes people say, 'Gracious, Miriam's very tiny isn't she? That must be to do with the heart, she's quite sensitive isn't she?' And we've always said 'no, she's not, there are other people in the family who are small'. If there is something that people continually ask about, it is nice to have confidence yourself that actually it's nothing to do with it or it is but it will change after the corrective operation. Because it can be quite undermining to have people saying things to you and questioning things about your child because you are protective of your children anyway. And especially if one has something wrong with them, it does make you extra sensitive, I think. 

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.

 

They don't treat their son as disabled and make their home life as normal as possible in between...

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Age at interview: 5
Sex: Male
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Mother' So I mean you live with it every day. [Father' Hmm]  As I say, trying to make it as normal as possible when you're at home I think helps. Not making it that there is a disabled child in the house [Father' Hmm] make it normal, you know.

Father' Yeah, don't wrap them up in too much cotton wool.  

Mother' No, have, have the fun.

Father' Don't let him know he's disabled. Let, treat him as a normal child and that way he'll grow up to be a normal child. [Mother' Yeah] He won't grow up thinking 'Oh, I'm disabled, I can't do this, I can't do that' you know.  

Mother' 'Why am I so different?' You know, all those kind of things. [Father' Yeah] You don't do that when you're at home. You make your home environment as normal as possible and that's how we cope. [Father' Yeah] The only time we have to think about it is when we get an appointment card through the letter box.  

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.

 

They focus on the positive things their son can do and don't treat him as a child with a heart...

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Age at interview: 3
Sex: Male
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Mother' It is difficult to distance yourself from the fact that your baby's got a heart problem at such an early stage and to be totally honest in that early stage it is heart problem and then baby. You've got to try and not let that be, you've got to see baby first, problem second, don't let that heart condition rule those first six months. And that's very difficult to do that, very difficult. Because we found that, to me it was heart problem, very ill child, baby second. So we missed out or I missed out on the months of Dan being a brand new baby, the joys of a brand new baby. 

Father' If you don't, if you don't look at the bleak side and look at positives, encourage him to kick a ball, encourage him to play with friends, be a normal 3 year old boy and that is what Dan is. Yes, there's limitations, there's always going to be limitation. You know, if he wanted to be a professional sportsman, in certain fields that wouldn't be the question but he can be a professional musician or a writer. It's your input into the child. We look at Dan not Daniel with a heart condition. We look at Daniel as a baby boy who's naughty like every other little boy and further down the line without sounding irresponsible, he's got a heart condition, we don't want to tag that with Dan, next to each other. We try to distance it. When it comes up to the point where Dan needs an operation yes, that's the moment that you absolutely dread and you are supportive to Dan.

 

Explains that it is difficult to get the right balance in letting her son who has hypertrophic...

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Age at interview: 8
Sex: Male
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I mean it's very hard, like I change my mind on this all the time actually. I mean, he knows he has it, he knows he has some limitations, sometimes he goes beyond what I think his limitations are and I don't always, I'm not always very aggressive at I guess preventing him from doing the things that he wants  Because I don't, I want him to be as normal as possible. It's a very fine line. You know, there's a couple of weeks ago, he loves football. 'A couple of weeks ago I was thinking 'Gosh, should he be playing it?' You know, I spoke to the consultant, you know, the consultant said 'Well, he'll probably be OK. It's very unlikely that at his age that he, he would drop dead. But I can't promise you and it does happen occasionally'. So, things like that are very difficult. And I'm constantly kind of changing my views and especially working here you see a lot of worse case scenarios because those are the people who really need support. And you do, you do wonder sometimes if you're not restricting enough or restricting too much.

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).



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Last reviewed July 2018.

 

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