A-Z

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...

Her 5 year old daughter who has pulmonary stenosis has plenty of energy and goes to tennis...

Age at interview: 5
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
She enjoys exercise. She eats healthily and also she does tennis lessons, dancing lessons and swimming every week. So there's no sign that her heart isn't working properly or else she wouldn't be able to do these things and I like her to keep fit and healthy as well, as a normal child I would anyway but especially with her heart problem to get plenty of exercise. She also started school and she goes to PE three times a week there. So she's getting plenty of exercise all through the week. 

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...

Their son has many colds leading to coughing and vomiting during the winter months but this is...

SHOW TEXT VERSION
PRINT TRANSCRIPT
Mother' I think, I think the one thing that I still find quite difficult and I haven't found an answer to is the fact that, and I don't know quite why it happens is that whenever he gets a cold he just can't seem to get rid of the phlegm. And its this sort of, the only way he seems to be able to clear it out of his system is through being sick and vomiting. And he only vomits because the coughing is so violent that it empties all the contents of his stomach and that's the only time then that the phlegm comes out in that.

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.

Describes how her son managed to come first in the running race at the school sport day.

SHOW TEXT VERSION
PRINT TRANSCRIPT
On sports day. Luke actually joined in with the first sports day just before he was five. It was school sports day and all week, the week prior, Luke was upset he couldn't join in. He couldn't run like the other children. His poorly heart wouldn't let his legs work. We had tears at night. And it wasn't a problem. Luke didn't have to join in. He could have sat on the side and watched.  It didn't matter. I went to school and spoke to the teacher and said 'Look Luke's crying every night. He doesn't want to join in, he can't run'. And she said 'But he is wanting to join in when he's here. He is doing his best. We're not pushing him. He knows he doesn't have to join in'.  

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...

Explains that their son who has not yet had surgery, is not able to join in with all the things...

SHOW TEXT VERSION
PRINT TRANSCRIPT
Mother' I think that the other thing that's a little bit more difficult as he gets older is that he, becomes much more aware and he's socialising more and he's got his little friends at nursery and that and he's got an older sister who is running around, bouncing everywhere, wants to do daredevily things with him like jump off the top bunk and stuff and he can't do it. He wants to join in and he can't do it and that's kind of him now having to deal with it.

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...

She comments that her son knows his physical limitations and he'll sit down and do a jigsaw or...

Age at interview: 3
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
They have a session at the end where they sort of play with the bikes and things like that, and he's quite happy to join in there. But he won't race around like the others will. In some ways it's quite nice because he's not quite as hectic, you know. But he just, he seems to know his own limitations, you know, when he's had enough, he will sit down, you know. 

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...

This 3 year old is severely limited by a complex heart condition; gets out of breath easily, poor...

Age at interview: 3
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
I think on a day to day basis especially now we're coming to the winter it's the simple things, making sure he's warm enough. He is blue. He does get cold because his circulation isn't great. He tries to keep up with other kids, especially his older brothers, but he gets breathless very, very quickly. It's watching out that he doesn't get knocks and get, and gets cuts with him being on Warfarin. Holidays, OK everybody's not everybody's not able to go on a foreign holiday all the time but we used to go, we'd go on holidays that required a flight. He can't fly so we've had to rethink that. We'd go to, so we went to France. Then we'd got the problem over medical insurance and virtually you need to get a letter from God trying to get your medical insurance because they put all sorts of stipulations in why they're not going to cover you.

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...

Explains that her son had a very good quality of life, even though he had a serious heart...

SHOW TEXT VERSION
PRINT TRANSCRIPT
He was happy. He loved Bob the Builder, Noddy, Postman Pat. Bob the Builder was his favourite. We took him to see the Bob the Builder live show. It was a week before his operation, last year so I'm really pleased we did that. He was such a chatterbox, he was very determined. He used to get frustrated because he couldn't do things. He used to get frustrated because he couldn't ride his bike but he persevered and he could ride a bike with stabilisers. Not as fast as other children but he could.

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...

Her 5 year old son who had a complex heart condition has plenty of energy, is very outgoing and...

Age at interview: 4
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
I mean if you were to see him, you would not know that there was, that he had a heart condition. When I tell people he's got a heart condition, they don't believe me. They think it's something, a minor thing, he's got a heart murmur maybe and they just can't believe him because he is such an outgoing child. He runs around and jumps up and down everywhere. He won't stand still, he won't walk anywhere, he runs everywhere. But this is all following on from his second, second heart operation. After his first operation, I suppose he was just starting to deteriorate and he hadn't got the same energy levels. He's fantastic and he's really, he can really hold his own now. Stand up for himself. 

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...

Explains that her son was proudly showing off his scar to everybody when he was around at a...

Age at interview: 4
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
When he's around at a friend's house having tea which he was the other week, his friend's mum was telling me that my son was there proudly showing his scar off to everybody. [laughs] He's not, not ashamed of his scar, he shows it off. He's got quite, quite a big scar. After his first operation, the scar was very neat. But after the second one, I forget what it's called, Cailoid I think, it is, where it's gone like really red and lumpy. So it isn't a discreet scar and you can see it a mile off and he stands proud and shows it off [laughs]. I think I've learned a lot from him really. 


Donate to healthtalk.org‚Äč

Last reviewed July 2018.

donate
Previous Page
Next Page