Mother;Yeah, because if he goes for a check up weve got, what we call now is the ECG, we call that his ‘sticky pads’ and for his echo that’s his ‘jelly belly. So well say, hell say ‘What am I getting done today?’ Well 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;Hes quite happy with that;

Mother;You do have your own way for things;

Father;Hes 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 hes, 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.

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, were, 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. Were a great family for photograph albums and kids, you know, the kids look, love looking through them. And weve got photographs of her in hospital, my brother came down to see her, or up to see her and took some photos, so weve 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, weve 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.

Well, it’s just really difficult to explain to a 3 year old because although hes 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 hes got a problem with asthma because hes 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 hes a bit older and I feel that he can understand. Weve 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 hes 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 hell understand more.

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 hed 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.

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 theres 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 hes always known. It’s kind of like hes 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, were 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.

I’ve said that shes got a, well before we went into hospital for the operation I said shes got a poorly heart and were 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 shes 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. Shes 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, theres 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. Hes much better than I am and he gets down to her level and he tries to explain and uses really simple words. And theres 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 hes 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 hes explained it using the same words. But usually he does the explaining because hes very good at it.

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 were 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 were going to stay overnight, but she can come and see us the next few days and daddy’ll bring her in and well do all this and were just building it up but it was just for a few days ‘cos in our heads wed go in on this day, it’s being done on that day, hes 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 th; [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 wed 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 hell 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;