Interview CH30

Age at interview: 3

Brief Outline: Their daughter was diagnosed with pulmonary atresia, VSD, and an overiding aorta. Treatment: closed heart surgery (shunt) at 11 days old, closed heart surgery (shunt) at 11 months old. Corrective open heart surgery at 2 and a half yrs old. Current medication: none.

Background: Diagnosed at 10 days old. Parents marital status: married. Occupation: Mother-Full time mum (trained as a GP), Father-Curate. Other children: one younger child. The family lived close by to a specialist hospital.

Explains that her daughter's heart defect was just bad luck and she did not see any benefits in...

When we were in hospital that first time they did blood tests and did checking to see whether it was a chromosome problem, which it is often linked with. But there is no cause for her. And also they were able to tell us that it wasn't a link, there was no link with this and any other problems that were going to manifest themselves, as far as they could look for them anyway. So that was reassuring. And it's just bad luck, isn't it? It just happens to some people. So I certainly haven't poured over thinking about my pregnancy, thinking what have I done wrong? Certainly that would have, I'm sure that goes through people's minds, thinking what have I done wrong, what could I have done, how could I have prevented it? But these things happen and that's just the way it is. You can't change it; you're not going to prolong your life by worrying about it. You're not going to change the situation. 

Describes the extra effort their child's surgeon made in communicating with them which they said...

And the other funny thing was when the consultant came who was going to be doing the operation, that was the first time that we'd met him, and he walked on to the ward and I was holding Miriam and she looked at him. She looked him up and down and said 'nice coat' and had us all absolutely in stitches. The way they can just break a moment. We were all stressed up to our eyeballs and she said 'nice coat'. It was a tweed jacket, as it turned out, it was very funny. Slightly threw us all. He was lovely, looked much younger than we were expecting him to be, but then we saw him wandering around the corridors. Once we left to go and wait however many hours it was, we then saw him talking to other parents in the corridor and things. And every time we saw him, which was twice, we kind of looked at him and thought shouldn't you be operating on our daughter? But he saw us, recognised us and said, explained the situation, which was lovely for somebody to, he needn't have bothered, he didn't need to explain himself, so that was a lovely touch. 

And he had a lovely conversation with my husband as well about his family and he's got children and how difficult he perceived we must have found it. And little touches like that, lovely, really, really nice.

Explains that every now and then she has negative thoughts about the future but she tries not to...

She's had the corrective operation and she's doing really well. She's got future operations to come, we know that, and we know that they're not without risk. Between operations we try to ignore the operations as best we can, a sort of coping mechanism as much as anything else. Every now and then you do get the negative thoughts, though. The kind of what is going to happen? At the beginning we were told that she'd have normal life expectancy, she's probably be able to have children, you know there's nothing about her heart that would mean she wouldn't be able to have children, have a normal life.  

Every now and then somebody says something that you think, maybe that's not true or maybe that's changed or maybe that won't be the case for her. How much that that's different from other children and thinking about them maybe getting run over by buses or maybe getting a childhood cancer or whatever else, I don't know. It's just because you've got something to focus your anxieties as a parent on, perhaps. But I do think what happens if one of the operations in the future goes wrong? What happens when, she's got an artificial bit, a bit of tubing in and when that gets replaced what happens if it doesn't work, what happens if' And you can always live a 'what if life' but when I think about it, you know I think about it a bit and pray about it and then I leave it and move on. But yes, those thoughts do happen and do occur and I think everybody, well I know all the people I've talked to have similar doubts and questions and worries about the future. But if you think about it in the cold light of day when you're not having one, other people, well you have the same worries about healthy children, it's just that you've got something to focus your worries on, the fact that they've got a heart problem. And it doesn't help them or you to get on with life to focus on that so it's much better in the long run to take every day at a time. You don't improve your life by worrying about what is going to come tomorrow.

People used to comment on her daughter's small size and she found it helped to have confidence...

Yes, sometimes people say, 'Gracious, Miriam's very tiny isn't she? That must be to do with the heart, she's quite sensitive isn't she?' And we've always said 'no, she's not, there are other people in the family who are small'. If there is something that people continually ask about, it is nice to have confidence yourself that actually it's nothing to do with it or it is but it will change after the corrective operation. Because it can be quite undermining to have people saying things to you and questioning things about your child because you are protective of your children anyway. And especially if one has something wrong with them, it does make you extra sensitive, I think. 

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

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.

She had made a conscious effort to make time for her husband and to talk to each other rather...

That is one thing that's really hard, is you spend time with your child and focusing on your child and you forget about your husband or wife. And I find that particularly hard because I get very focused on Miriam and also that kind of middle distance hospital thing where nothing happens and when it does happen, it all happens in a sudden rush. And it is almost like you have to switch your brain off in order to be able to cope. And [my husband] finds that very, very hard. So for us both to get out of the hospital and have some meals together and try and relate to each other rather than just relating over Miriam is important and is important for him and important for me to do for him.  It would be very easy for me just to focus on Miriam and concentrate on her and expect [my husband] just to fit in. But to try and keep your marriage going and alive at the same time as having this very stressful situation is really well worth, because you are your main supports, however nice nurses and the people that you meet at the hospital, and the doctors are. It's not halfway as good as your best friend.  

Is that something that started at the beginning?

Making sure we spent time together? Yes, to begin with when Miriam had her first operation because she was so new and she was our first child, it wasn't really an issue because we were only used to relating to each other and there was just this new thing that we hadn't quite got used to yet. So for the first time it wasn't really an issue, we were just kind of in each other's arms the entire time. But certainly for subsequent operations we have had to really concentrate, certainly I've had to really concentrate on it. Making sure that I do give [my husband] time because I think it can be a terrible strain on a relationship. And it is, even in a strong relationship, a strain. So to be able to make sure you're spending time with your husband as well rather than just focusing on the child, which is the natural kind of nature instinct is to look after the child because your husband can, in theory look after himself. I think it is important but hard to do.

Describes the benefits of the pre-admission day and visiting paediatric intensive care before...

When we went in for that day, for the first sort of pre-admission day, it was a lovely experience in lots of ways. The difficulties were getting there, transport getting there was a disaster. It took us as long to get there as it took somebody to get there from Sheffield which bearing in mind it is only 20 miles, you raised your eyebrows somewhat. Anyway, so that was a difficult issue.  

When we were there we had one nurse looking after us all the day, along with another family, well father and daughter and she was going to have a very similar operation to Miriam. And he was a doctor as well, funnily enough, so we chatted to them, which was good. The only other family that we'd come across in any depth was [my husband's] godson so another family, it was good to have some conversations with them. We were looked after by this one nurse and taken to various places and had various tests done and taken to intensive care. And when we went to intensive care it wasn't a matter of wash your hands here, leave your baby there, please don't make any noise. 

It was come on in all of you, bring the pram, bring everything. Yes wash your hands here. Come in, you're very welcome, this is where Miriam will be. We don't know which bed, these are the nurses, this is where they are, this is how you get in. And to be shown those things in a relatively stress-free moment was lovely. So it wasn't a matter of right, she's in theatre now, now we're going to show you when you're feeling very vulnerable and you won't even remember anything anyway. So that was very good and I would certainly recommend that people got that, to go and see the intensive care and go and see where your child is going to be. That was very well done from our point of view. 

Describes taking their toddler to the anaesthetic room for her operation and how they were able...

After she went into, the anaesthetic room is, actually, quite a poignant moment for us.

We'd been discussing whether we would both go in or one of us goes in or quite how we do it and I don't really like anaesthetic rooms. [My husband] did the first 2 operations with her but as soon as she got into a situation of wanting, of asking for us, I then said I don't think I can do that. I don't think I can give her to you to take in when she's crying Mummy. It just pulls too many heartstrings. It probably doesn't make any difference in the long run of things but I didn't feel I could do it. So I said I think I need to go with her if she's saying that. Fortunately they let both of us go in so it wasn't an issue. And so we both went into the anaesthetic room and the registrar who'd been up to see us on the ward then said 'if you could lie her on the bed' at which point I, to be perfectly honest, I panicked because I thought there is no way, I mean she is already crying and grabbing on to me. There is absolutely no way you're going to get her lying on that bad without a real scene.  

She wasn't quite into tantrums at that point but I thought we were pretty close. She knew what was going to happen, she's been through enough operations recently enough that she knows. And so at that point I was sat on a stool and I said 'well last time' which wasn't that long beforehand, 'last time they did it while she was in my arms' at which point a consultant walked through the door and said 'in that case we'll do it that way this time as well'. And just walked over and completely took over the situation and she was put out whilst I was holding on to her which was much, much kinder. I mean it was hard enough as it was, she was crying and she hated it and she was trying to pull the thing off and kicking and all the rest of it. Yes, but for somebody to come and take control of the situation when everybody was losing it was lovely.  

So we then, I put her down on the bed and I left. My husband then found it very hard to leave, it obviously just hit him at that moment and they were trying to anaesthetise her and put... and he was still trying to hold on to her and kiss her. I think he found that very hard, leaving her. He didn't get in the way, it was only probably a few seconds but he obviously felt it and I felt him feel it at that point. And then we left and went back to the ward, then went to intensive care again just to remind ourselves at that point. 

Describes the parent accommodation facilities at the hospital in London which they said it had...

Because for us that was a big issue, moving centre. We didn't have lots of friends in the new place; we didn't have anywhere to stay. It was great that they had that all completely set up and there was a whole department that was there to look after the parents to make sure that you got somewhere to stay, that you were okay. That all that side was taken care of, which was great because you don't want to be worrying about where you're going to sleep when you've got your child going in for this major operation.

What did the accommodation involve?

It didn't cost anything and it involved picking up a key or they left a key at reception. And there were, I don't know how many houses, but there was one, it was across the road from the hospital, it was that close. And it was a house of about 12 rooms and we had a twin room and there was a cot in it for the baby and with an en-suite bathroom. So it was a private place that we could be to spend time together. There was a sitting room with a television, not that that worked particularly well, and there was a kitchen; there were cooking facilities, it was really good. The facilities were fantastic and we were very, very grateful for that. And whilst your child, again, was in intensive care accommodation was provided for both parents. That then switched once your child was out of intensive care but fortunately we were able to have a room for both of us still, and the baby. So, usually what happened is that once the child moved on to the ward the parent would sleep by the bedside but we'd never done it so far, so we didn't do it then either.

And we both went home at night when she went to sleep and we went and slept in our family room together with [our son] so that made it very nice for us. And I think to get out of the hospital and to spend that time, even if it is just going for a walk to buy a snack or just going for a walk round the block, to get out of the hospital environment when Miriam was in for an operation and to spend a bit of time together away from the stress of it has been very important. And I think it was important for [our son] as well because otherwise he was just completely hospitalized for that 10 days. 

Her 3 year old daughter's operations had not delayed her development and she is able to do what...

But she goes to lots of things with lots of other children. She goes to various cr'ches associated with the church and things and she's got lots of little friends her age and she does all the same stuff as them. Parents, especially after operations, say 'oh you will be careful with my child because they're so rough and I don't want them to hurt her' and it's not been an issue at all. I can imagine with a very active child it would be because they would be much more likely to hurt themselves after the operation.  

But it's a very short period of time that you have to be careful anyway and even then the instructions that you are given about what to avoid and what to be careful of, people are very realistic about what toddlers get up to. And it has not stopped Miriam doing a thing, I shouldn't have thought, nothing. She's just done the normal things, I don't think it's held her up.