A-Z

Parents of children with congenital heart disease

Talking to your child about their heart

It can be difficult to know what to tell a toddler or a young child about their heart condition, their treatment or their operation. Suggestions for what to tell children, advice and information are available from various support organisations (see 'Resources and Information' section). The play therapist at the hospital may be able to offer advice.

Making hospital visits fun was one way parents helped their child to deal with what was happening to them. Describing the Echocardiogram as 'jelly belly'; 'sticky pads' for the ECG, and zipper to refer to their scar helped young children to be less afraid of tests or examinations. One mother referred to her daughter's pacemaker as 'Pacey'. Another was planning to buy a doctor's and nurse's kit to help prepare her 3-year-old for a future operation.

 

Explain that they try to make hospital appointments fun.

Explain that they try to make hospital appointments fun.

Age at interview: 5
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
Mother' Yeah, because if he goes for a check up we've got, what we call now is the ECG, we call that his 'sticky pads' and for his echo that's his 'jelly belly'. So we'll say, he'll say 'What am I getting done today?' We'll say 'Well, jelly belly and sticky pads' and he knows what you're talking about now. So, it doesn't' frighten him, you know, all the big machinery. If you just say 'jelly belly' that's the way we cope with and he thinks it's quite funny actually. 'Am I getting my jelly belly?' So'

Father' He's quite happy with that. 

Mother' You do have your own way for things. 

Father' He's quite happy to go through that as long as he doesn't get a jab. That's the only thing that terrifies him. [Mother' Yeah]. Because of what he's, the way they done it before. You know, [Mother' Right from the start] needle in the' 

Mother' So that's why now we just don't allow it, we get him sedated first. [Father' Yeah]. We make him more relaxed. 

Father' And that's quite funny.  Was it, what's he call it?  'Wibbly wobbly'     

Mother' Yeah, I'm all wibbly wobbly.

Father' Yeah.

Mother' It's, it's quite, you usually find that these children have got quite a character about them [Father' Yeah, definitely] and it, it kind of helps you both. It helps the child but it helps you because you can have a laugh about it with them. You can be more relaxed, you can have fun and that helps you to make it, to make them aware. So having your own little sayings for things and the, the children have their own little sayings for things. And you do laugh about it. [Father' Hmm] And it's great, I think it helps, you need to do that.

Many parents had used simple language and had talked in stages to their child about their heart condition. They planned to provide more detailed explanations when their child was older. One mother had used science to help her 8-year-old son understand his heart condition, explaining, for example, that he couldn't be an astronaut because he had a pacemaker. Another had told her 5-year-old daughter that she had a heart murmur but she had not talked about the balloon catheter operation she had had as a baby.

 

Describes how she talked to her daughter in stages about her heart condition.

Describes how she talked to her daughter in stages about her heart condition.

Age at interview: 12
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
I don't' know, it's like, I don't think there was ever, was never a sit down and I'm going to tell you. I think partly because check-ups, we're, you know, going to the hospital for a check-up, I suppose as she started to grow and develop her memory, she would remember doing it. We had photographs. We're a great family for photograph albums and kids, you know, the kids look, love looking through them. And we've got photographs of her in hospital, my brother came down to see her, or up to see her and took some photos, so we've got those. And she was christened in hospital, when she was in hospital. I just sort of hedged my bets as it were. You know and they're sort of family photos that come out. 

And I know she, when she started school and they'd get changed for PE somebody had asked her, one of her little friends had asked her and she said, she came home, she said, 'Tsk, they asked what that was? And I said it's where a tiger had clawed me, but it isn't is it'. And I said 'No it isn't, you know what it's from, don't you?' And she said, 'yes, my heart surgery'. And from time to time, you know, we've talked about it. I mean the thing is children's understanding, you can't give them a whole piece of it, they've got to have a framework that bits stick to. Sometimes you tell them bits and it falls through but sometimes it sticks and then gradually they built up a whole picture. 
 

Explains what she told her 3 year old son about his Wolff-Parkinson-White Syndrome.

Explains what she told her 3 year old son about his Wolff-Parkinson-White Syndrome.

Age at interview: 3
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
Well, it's just really difficult to explain to a 3 year old because although he's really bright he can't grasp that there is something wrong with the heart because they can't see the heart. I have shown him some books that I got for the older children for the facts of life, etc and it shows you where your heart is in your body. But, you know, he looks at it for a couple of seconds and just goes off and plays with his cars or whatever. Oh he understands that he's got a problem with asthma because he's got to have his inhalers with his bubble. But he doesn't understand about his heart because he doesn't have any medication for that now and even if he did he couldn't connect the two because, like I say, he can't, he can't see it. All I have said is that, when he had his last episode, 'you know when you said that your chest was banging' and he said 'yes' and I said 'that's your heart being naughty, it was trying to sort of run away' and he said 'oh right' and that was it. He just can't understand it, but ignorance is bliss as far as I'm concerned. 

I mean, do you have any ideas about how as he gets a bit older, you might talk to him about it?

Yes, when he's a bit older and I feel that he can understand. We've got a photograph of him in intensive care; they always take one for you. And he said 'is that me, is that me?' because his sister had told him that it was him and I said 'yes'. 'Why have I got them all over me?' and I said 'oh you weren't very well because your heart wasn't working properly but it is now' but he just said 'oh' and turned to the next page. So when he's older I will explain that, in very simple terms, that he has got a bit extra on his heart and that sometimes it's naughty and beats a bit faster than it should. But the school are well aware of it anyway, he goes to pre-school there so they'd pick up on any problems. And obviously as he gets older he'll understand more. 

Children who have had surgery as a baby are unlikely to remember what happened to them and may need explanations as to why they have a scar on their chest. One mother describes how she told her three-year-old daughter that she had had 'a broken heart' which the doctors had mended.

 

Describes what she told her 3 year old daughter about the scar she has down her chest.

Describes what she told her 3 year old daughter about the scar she has down her chest.

Age at interview: 3
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
So does she know she's got a heart condition?

Sort of. She, she knows she went to the hospital and, she, 'cos her, 'cos she's got a scar sort of down her chest she knows that, she thinks that's, 'cos her heart was broken. She said it's, her heart was broken so she went to the hospital and, and they fixed it and that's what's left. So, also that, as I said to my other daughter, to explain it to her, we just go, she sort of thinks the same that Taylor's heart was broken and the hospital fixed it and, and she's all better now. 

That's how you, you've explained it to her?

Which is, yeah, they're, they're both fine with it, you know. As they're, when they're old enough to sort of understand properly then, you know, then they'll know the truth. Well, sort, you know, but so far, yeah. So they, Taylor when she, she goes to the hospital now she don't sort of know it's for a, a check up. She don't sort of understand as such but my other daughter knows that she's going just to make sure that her, her heart is, is still fixed and not broken a little bit.  

Some parents had shown their children photographs of themselves when they were in intensive care. Those who did, said their child had found it difficult to identify with the photographs at first. Some children wanted to take these photos in to school to show their friends or for school projects.

 

She showed her son photos of when he was intensive care as a baby when he was over six years old...

She showed her son photos of when he was intensive care as a baby when he was over six years old...

Age at interview: 7
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
And he, he can explain to his friends what's happened which is, so I've always been quite open with him in trying to explain what's gone on in the past.  I only showed him a photo of what he looked like in intensive care when he was, he was over 6 and they were doing a project at school of how, how I've changed over the years. And they had to take in a picture of when I was a baby and when I was two. And so I asked him if he'd like to see it and he was, he said, 'Are you sure that's me with all those tubes there?' And he was very intrigued and so he said could he take it in to show his friends at school because he thought they'd be interested in it. 

As children become older, parents wanted to make sure that their child was aware of the health risks of their heart condition. One mother of an eight-year-old son with hypertrophic cardiomyopathy describes how she found this difficult.

 

Explains that she found it difficult talking to her son about the risks involved with his genetic...

Explains that she found it difficult talking to her son about the risks involved with his genetic...

Age at interview: 8
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
Really just I mean it's quite unfortunate, I mean it really is, it's educating him and I have to tell him that if he does something too strenuous or he gets out of breath, that he is putting himself in danger and I, you know, have told him that, you know, it can lead to you collapsing and dying. And that's a horrible thing to have to say to a child but if I don't say that then there's a much higher chance of it happening. So that, that I found, and still find, very difficult.

When did you first tell him about his heart?

I can't remember the date but he's always known. It's kind of like he's always known. I tried, I tried my hardest to make it, to put some positive sides to it. You know, I said to him, you know, we're all different and it's, it's, will probably make your life more difficult but when you have to go through things that you also gain strength and are able to help other people and, you know, it just makes you a better person all round. So far he buys that one.

Some parents talked to their children about their forthcoming operations. Others chose not to. One couple felt it had been beneficial not to tell their three and a half year old son that he was going to have an operation while he was in hospital. Another describes the dilemma that she and her husband had and explains why she thinks it was a mistake not talking to her toddler about his operation.

 

Describes how they told their two and a half year old daughter about her heart condition and her...

Describes how they told their two and a half year old daughter about her heart condition and her...

Age at interview: 3
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
I've said that she's got a, well before we went into hospital for the operation I said she's got a poorly heart and we're going into hospital for the doctors to make it better and she was going to have an operation. And we showed her photographs of when she had the first operation and, of course, this friend of hers who's a little bit older has also got a poorly heart. And we talk about, if we see somebody with a poorly something, we talk about it. So from that point of view I don't think it's a big issue to her that she's got a poorly heart. And she talks about her 'scarfs' which are her scars and she shows people her 'scarfs'. So to talk about things and to show her. She's quite sensitive about her scar still and if you go to touch it or do something to it, I mean it's all healed up fine, there's just a little bobbly bit at the top. She doesn't really like you touching it and she tells you to go away. That's improving, improving with time. 

But we try and tell her as best as she can understand. And my husband is very, very good at doing that. He's much better than I am and he gets down to her level and he tries to explain and uses really simple words. And there's no point in telling her too much either because they pick up on so much of your emotions and how you're feeling that at two and a half you've just got to be quite careful. But he's very, very good at doing it so we have some job distinction there. That's one of his things that he does more. And then I talk about it once he's explained it using the same words. But usually he does the explaining because he's very good at it.

 

Explain that not telling their son that he was going in to hospital to have an operation had...

Explain that not telling their son that he was going in to hospital to have an operation had...

Age at interview: 4
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
Mother' So when we went in, our play, this play therapist was saying 'Oh maybe you should get a doctor's kit and look at these books and duh, duh, duh duh'. And I'm thinking 'Well we could get a doctor's kit, that's a bit of fun' but I'm not going to say particularly why and I did pick one up but it's never been played with has it [Father' No, that's right.] and by the time we were going in I just sort of said 'Oh we're just gong to see [the consultant] and stay in [the consultant's] house, in, in this house for a few days as he did his few tests on you and just check you're all right and everything. 'Can', so, 'my sister stay', 'No' 'cos we're going to stay overnight, but she can come and see us the next few days and daddy'll bring her in and we'll do all this and we're just building it up but it was just for a few days 'cos in our heads we'd go in on this day, it's being done on that day, he's going to be out of it for the next two days, it's the weekend, everybody's coming to see you, you're feeling better. That's how we worked on it. And it worked, it really worked. Apart from the  [Father' Yeah, it did] blip that it took us long, a long time to get down to the operating theatre and he was then beginning to say 'Well why am I here? I don't want to be here' sort of 'Oh, I'm hungry. Why can't I eat?' And it was going to be absolutely awful if it had to be cancelled and we'd gone through all that [Father' Hmm] but there was absolutely no need to tell him whys and wherefores because it was over his head. And he'll say to you now, 'I had a hole in heart but it's OK now'. [Father' Yeah, yeah]. If I had told him, what point was, I mean we couldn't with this happening and this happening, it was just unnecessary. 

 

Explains why she thinks it was a mistake not telling her toddler that he was going in to hospital...

Explains why she thinks it was a mistake not telling her toddler that he was going in to hospital...

Age at interview: 4
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
So, he was two and half at this stage, and my husband and I thought, well what do we, do we tell him, do we not tell him. Because obviously before he'd only been a weeks old and he knew nothing about it. Well I wanted to tell him, my husband thought it better not say anything to him. So we did lots of role-playing at home, bought a doctor's kit, did all these different things. We took him to the local hospital because they have on a Saturday morning, have a children's club for children that are going in for surgery, they can just play with the equipment, the blood pressure and that. So I took him down there and he was having a great fun doing all this and not realising what was to come and me thinking, oh gosh this is awful. And the night before his surgery, I still wanted to tell him, and my husband said, No, I think we shouldn't, we're better off not telling him. So we didn't and on the plane, I'm saying to him, ' oh, should we not say anything where we're going to.  We hadn't even told him we're going to hospital. And we're having a real, a real battle between ourselves what shall we do. We didn't know, we didn't know what to do for the best. I thought tell, my husband said not to tell. 

But he had dreadful nightmares for months afterwards. And I think it was a mistake not telling him, I don't know, maybe it wasn't. But I just, since then when I've read, read about advice prior to your child going for surgery, the advice given is to tell them. But you don't know sometimes what to do for the best. 

I think that we've really, really learned a lot from that second operation by the fact that we didn't tell him, or maybe just because he's older, I don't know. But I try to be as completely honest and tell him everything that I think he needs to know, not all the gory details. He knows he's got a heart condition. He doesn't know he has to have more surgery, we've not told him that. He knows the doctor's fixed his heart.

The British Heart Foundation has a booklet 'Sammy's Heart Operation' which are aimed at 7-11 year olds and tells the story of a child’s visit to hospital for a heart operation it can be ordered from their website.

Heartline has two colouring books which also tell a story about children in hospital' 'Baby Bill' and 'Growly and the Outpatients Clinic'.


Donate to healthtalk.org

Last reviewed July 2018.

Last updated July 2018.

donate
Previous Page
Next Page