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.
She has learnt to accept that it is not possible to predict what might happen in the future for...
Her son may need a heart transplant in the future but she tries not to worry about it too much...
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...
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.
Although it was awful at the time, and occasionally she has had worries about her daughters...
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...
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.
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...
People used to comment on her daughter's small size and she found it helped to have confidence...
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...
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...
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...
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.