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Parents of children with congenital heart disease

Interview CH25

Age at interview: 8
Brief Outline: Andre was diagnosed with Hypertrophic Cardiomyopathy at 3 months old. Treatment: he takes Verapamil and has to limit his physical activities. He has annual check ups. Her 6 month old daughter has a VSD, diagnosed when she was 3 months old. It is expected that the hole will close on it's own, without the need for treatment.
Background: Diagnosed at 3 months. Parents' marital status: married. Occupation: M-Cardiomyopathy Association, F- Sales & Marketing Manager. Other children: 6 mths old and 3 yrs old. The family do not live close by to a specialist hospital.

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Describes her feelings when she discovered her son had inherited hypertrophic cardiomyopathy.

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Describes her feelings when she discovered her son had inherited hypertrophic cardiomyopathy.

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So I think, you know, for a lot of, a lot of fathers and mothers who have, you know, it can, it can be extremely difficult to deal with. And it, you know, there's also guilt associated, associated with a parent who's passed it on. You know, I felt a lot of guilt for a long time and I still do but again it's one of those things that I can't change. You know, I made the decision to have a child and he's a great child and, I would never, you know, wish I didn't have him. I mean, he's wonderful and has a lot to offer and is very sensitive to other people so ...

 

They try to make follow-up appointments fun when the whole family go for check-ups for...

They try to make follow-up appointments fun when the whole family go for check-ups for...

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He's never really had any great issues surrounding the check ups. You know, I guess we try our hardest to not let him know that we're nervous or that it's upsetting for us. We try to make it just kind of like a routine thing and try and make it fun and you know I have two other children who, who also go because they have to be screened as well up until they're young adults because it can develop at really any, it can develop at any age but it usually develops, you know, in adolescence as I said. So it's kind of like a family, a big family ordeal. You know, we all go and they get checked and, and then we see the consultant and we just try to, try our hardest to make it fun and not too serious.

 

Explains that it is difficult to get the right balance in letting her son who has hypertrophic...

Explains that it is difficult to get the right balance in letting her son who has hypertrophic...

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I mean it's very hard, like I change my mind on this all the time actually. I mean, he knows he has it, he knows he has some limitations, sometimes he goes beyond what I think his limitations are and I don't always, I'm not always very aggressive at I guess preventing him from doing the things that he wants  Because I don't, I want him to be as normal as possible. It's a very fine line. You know, there's a couple of weeks ago, he loves football. 'A couple of weeks ago I was thinking 'Gosh, should he be playing it?' You know, I spoke to the consultant, you know, the consultant said 'Well, he'll probably be OK. It's very unlikely that at his age that he, he would drop dead. But I can't promise you and it does happen occasionally'. So, things like that are very difficult. And I'm constantly kind of changing my views and especially working here you see a lot of worse case scenarios because those are the people who really need support. And you do, you do wonder sometimes if you're not restricting enough or restricting too much.

 

She has learnt to accept that it is not possible to predict what might happen in the future for...

She has learnt to accept that it is not possible to predict what might happen in the future for...

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I mean you have to accept the things that you can't do anything about and that's, you know, I've gotten to a stage where I can do that now. You know, once you get kind of past the anger you just have to accept the way things are, life is unpredictable. And even if we didn't have this condition in our family you don't know what's going to happen from day to day anyway. So I just try to think that every human being has things to deal with, you know, whether it's health things or emotional things. I mean nobody gets away with a completely easy life and I, I just try to remember that and, you know, cope with it that way. There's nothing I can do about the uncertainty and so I just, I hope, I hope for the best. And I hope that research brings better treatments and I hope that by the time my son starts having real difficulties that there'll be more that they can do.
 

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...

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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.
 

They had different ways of coping which she explains can be difficult.

They had different ways of coping which she explains can be difficult.

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I think it's been very hard to cope with as a couple. I mean, I'm also here now talking about it from the point of view of me having, having the condition as well. Because I've always kind of said, well, the fact that you don't know what's going to happen, that, you know, for example, I'm going to be having surgery. You know, I might die. I don't know. And I'm, I'm very good at saying things like that, you know, well, you know, Andre could drop dead playing football. You know. I always say things like that because it's a fact, I know that that can happen. The chances of that happening are not huge at this point but I will say that's a fact and he will, you know, come back with 'That won't happen'. You know, 'I just know, I have a good feeling'. You know, I think he's, he's, that's kind of been our way of coping. And sometimes I actually find that difficult because sometimes I feel that I need him to accept that it's not wonderful, that it's not always going to end up perfectly and, you know, it's just, even when my mother died from this condition 'Oh she's not going to die, she's going to be fine'. And she did. And that was very hard for me because I needed him to, just to accept my feelings and the facts and, you know, he, his way of coping is very different than mine. And that's hard as a couple. And the only thing I can say is, is just you have to talk through and be honest with each other.
 

Explains that she only found out from a friend at a later stage how devastated her mother was by...

Explains that she only found out from a friend at a later stage how devastated her mother was by...

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My parents were divorced when I was quite young. So I guess my step-father is the one who's more involved with my son and I think it's, I mean, it's been difficult for him. He's not a very, he doesn't express his emotions very well but my, my mother was, was very much devastated by, by the diagnosis and I think a lot more than she let on. And, you know, I had a friend who had, who had told me after my mom had died that one day she had come to visit my mother and my mother was in tears because she knew that Andre wasn't going to live a normal life. And that was very upsetting for me because she would never say that directly to me. But it does, you know, that was quite difficult. 
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