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