Parents of children with congenital heart disease
A child's quality of life
How congenital heart disease affects a child's quality of life may be influenced to a lesser or greater extent by the type of heart defect, the treatments and medication, whether it has been corrected or a child needs ongoing treatment. Studies of older children suggest that in some cases their physical abilities are considerably impaired, but they develop strategies to cope with their limitations.
Here we talk about parent's views of their child's quality of life in early childhood. Studies of older children suggest that parent's perceptions of their child's quality of life are sometimes not always in tune with the child's perspective. A few children had other health problems such as epilepsy and asthma, which limited their abilities.
Many of the parents we interviewed had noticed that before the operation their child's symptoms became worse and that this affected their quality of life, but after surgery they saw an improvement in their physical abilities. After surgery, it is usually necessary to take medicines in the short or longer term, for example warfarin, which can impact on quality of life.
Many parents of children who'd had corrective surgery, or had a less severe heart disorder, described their children as being full of energy and living normal lives, just like any other child. A few said that people would never know there was anything wrong with them. One mother said her son, who had never been very energetic, had gone skiing for the first time in his life after he had a pacemaker implanted (see Pacemakers and Interview 24).
Another whose 5-year-old daughter had a balloon catheter operation to correct pulmonary stenosis says she shows no limitations and goes to tennis lessons, swimming lessons and dancing every week.
Her 5 year old daughter who has pulmonary stenosis has plenty of energy and goes to tennis...
So as I say she leads a normal life. She eats healthily and she does plenty of exercise and she's never gone blue. She gets a little bit out of breath sometimes. I think that's because she puts so much energy into what she does. She runs to school. She runs up the road. I don't let her cross it by herself of course. But she's always running about and jumping about. She got plenty of energy. She's never been lacking in energy even as a toddler and she's never been pale. She's always had a fairly good complexion with rosy cheeks and she's never looked anaemic. She's never had dark lines around her eyes. She's never looked as if as she's lacking any, any nutrition.
Some children did have limitations. Some became breathless easily and found it difficult to walk very far or climb the stairs at home. One mother said that her 3-year-old son needs to be in a pushchair when they go out. Another couple, whose 5-year-old was too breathless to walk to the park and play have had their back garden redesigned so that he could play at home.
Some were prone to frequent, and severe, colds or chest infections in the winter months and had difficulty getting rid of them. A couple of older children had an annual flu vaccine injection.
Their son has many colds leading to coughing and vomiting during the winter months but this is...
And I just feel that I really would want to know is there an answer to this at all or is this gonna happen forever, is this because of his heart condition that you know whenever he has a slight cold or anything that
Father' It just brings him down totally doesn't it?
Mother' Yeah completely, totally, he's out of action for about sort of seven to ten days and um, and its just amazing really, its just a cold or its just something really simple like that.
Father' It's just been a cold hasn't it really?
Mother' Yeah and he just totally goes down.
Father' Yeah, yeah.
And how often does he have colds?
Mother' Now its getting kind of less.
Father' A bit isn't it.
Mother' But winter's coming but I would say at least once every six weeks.
Some older children had problems with physical education (PE). One mother of an 8-year-old boy with hypertrophic cardiomyopathy said that PE was difficult for him because when he was feeling well he wanted to join in the races and became very competitive but strenuous exercise was a risk to his life.
Another whose son had a severe heart condition describes how he had been helped to run and had come first in the race at the school sports day, which had boosted his confidence.
Describes how her son managed to come first in the running race at the school sport day.
So I told Luke that the following day, sports day, he didn't have to join in. If he didn't want to do it you don't have to do it. Mrs O'Brien won't be cross, it doesn't matter. You do the best you can and mummy will be there, mummy will be proud whatever. And the following day me and my mum went to sports day and Luke sat with his friends and the running races come and Luke was taken to 3/4 of the way down the track and the lady behind said 'Ooh, why's he half way down the track? That's not fair'. And I didn't say anything. It was like 'Well we know the reasons why' and the whistle was blown and off they ran and on the practices apparently all the children had overtaken Luke and Luke had sort of come in last. But where he got his strength from, his little legs ran and ran and he actually came first so he got a certificate for coming first.
So it was, we cried. It was very emotional. He was so proud that he'd ran. We were so proud that he wanted to join in that he'd ran. But to actually to come first, yeah, he'd only ran a little way but for him to do it was amazing. And that really boosted Luke's confidence.
Other parents had noticed that their toddler was becoming more aware of not being able to do the same things as their peers. A few mothers found it hard to cope with their child's sadness at realising their limitations. However, the mother of one child said he would rest when he needed to and then carry on playing. She would focus her child's energies on other non-physical activities and tried not to let him feel he was missing out (see 'How it affects daily life' and 'Coping').
Explains that their son who has not yet had surgery, is not able to join in with all the things...
And he's also learning to communicate as well in sort of short simple sentences and things and I think that's the thing that I'm finding quite hard is dealing with kind of you know his sadness in some ways at not being able to do some things or join in.
Father' He's pretty good though, he's not, I think he sort of realises he can't do as much and then he's fine you know if you just pick him up and make him rest he sort of realises he needs to rest. He is very good like that.
Mother' He sort of goes over into a crouching position and he does this quite a lot, when he knows he needs to rest or whatever he'll just, he'll just sort of bend down and it seems to be in either a squat position or crouching down.
Father' On the floor.
She comments that her son knows his physical limitations and he'll sit down and do a jigsaw or...
Sometimes I feel he, maybe he feels that he's missing out a little bit, especially in the summer when we're in the garden, you know and they're all playing and you can see he's like, I can't quite cope with this. I've had enough. But I then just tend to sort of spend a little bit of time with him and we sit and watch the others, and we laugh or we'll do something else, you know. He is quite a one, he'll love to sit down and do a jigsaw. So if the others are racing around in the garden or something and he's had enough, we'll come in and we sit down and we'll do a puzzle. He likes that, so. But all in all, he's very well and he can do just about anything that the others do.
Children with a heart defect need to be particularly careful about looking after their teeth to prevent endocarditis. They need to take antibiotics before any type of surgery, for example, having a tooth out.
Children with severe heart conditions had greater limitations. One couple said their 3-year-old gets out of breath easily, has poor circulation, can't walk far, has to avoid accidents because he is on warfarin and cannot get insurance for foreign holidays. Despite this, they said his quality of life was good compared with the bleak outlook they were given at diagnosis.
This 3 year old is severely limited by a complex heart condition; gets out of breath easily, poor...
Getting round and about isn't it, really? He always needs to be in a pram although he's 3 now. OK, there are a lot of kids still in prams at 3 but he can't walk very far because he, he becomes breathless.
Another mother explains that even though her son had a serious heart condition and was very ill at times, he was always smiling and happy and had a good quality of life.
Explains that her son had a very good quality of life, even though he had a serious heart...
And about two weeks before he died he learnt to go on his scooter properly. He used to stand on it and we used to push him around the garden but he learnt, he'd mastered his scooter. He was very slow but he mastered his scooter. He used to struggle with the stairs, he used to get frustrated because he wanted to go to the toilet and he couldn't walk upstairs quick enough, we had to carry him upstairs because he used to get so tired and breathless. And he used to sleep an awful lot. He used to be in bed for half past six at night. And other kids in the summer would be out playing and Luke would be in bed. That used to upset me. He'd sleep for 12, 14, 15 hours a day. Sometimes more, especially if he was poorly.
He was such a lively chatterbox and an entertainer. He was, his imagination was amazing. He was like, so imaginative, I don't know where he got it from but he was so imaginative. The things he was, he used to come out with, he used to pretend he was a magician and do little shows for us. It was so, we could see what he was doing but we had to pretend that we couldn't.
But he lived a very full life. He lived life to the full, within his limitations he. I've got no regrets, there's not one thing that I could say 'Oh if only I'd have done'' or 'If only I'd have took'' and we did it. If Luke wanted something we did it. If Luke wanted to go somewhere we did our uttermost to go and I'm so pleased, looking back, that we did. I've no regrets on that side of things. Luke did everything he wanted to do.
And we went everywhere we wanted to go. There's no, we did so much with him in such a short space of time and I'm so pleased that we did.
Several parents remarked that their toddlers were very sociable, happy and confident. One mother explains that her 5-year-old son who has a complex heart condition has plenty of energy, is very outgoing and can stand up for himself at school. One mother said that a few months following his pacemaker operation, her son was conscious of where it was in his body and nervous about getting knocked in the playground. Another couple had noticed that their 5-year-old was suspicious of strangers, which they attributed to all the tests and treatments he had undergone.
Her 5 year old son who had a complex heart condition has plenty of energy, is very outgoing and...
Scars from open-heart surgery often heal well. Some children were sensitive about them for a few months after the operation but most were too young to feel very conscious about them. One mother describes her son proudly showing off his scar to everybody when he was around at a friend's house for tea.
Explains that her son was proudly showing off his scar to everybody when he was around at a...
Last reviewed July 2018.