Interview CH17

Age at interview: 4

Brief Outline: Their son was diagnosed with a ventricular septal defect (VSD). Treatment' surgery to close hole and repair leaky valve at 3 years old. No further treatment planned. Current medication: none.

Background: Diagnosed at one week old. Parents' marital status: married. Occupation: Mother-Nursery Nurse, Father-Engineer. Other children: a twin sister. The family live close by to a specialist hospital.

Describes his feelings when they were told his son would need open heart surgery which they had...

Father' As we say, we were told, weren't we? the last, last January [Mother' January 11th] that he had to have this operation and I, I nearly passed out. I just sat in that chair and I was, my head was spinning, I went cold, sweat down my back and I virtually did, virtually passed out I was, I was that close. And all I could hear was everything going on in the background and [my wife] being upset and I was just in a different world. [Mother'  And the, and the....] I was sort of thinking 'Well I ought to be trying to help her and be pulling together but I couldn't... [Mother'  He couldn't no]  just out of it.

Describes telling friends who were shocked and frightened for them and explains that when one...

Mother' I think as we got stronger dealing with it and it wasn't such a shock and it all sunk in [Father' Yeah] I'm talking now sort of like March time, just before it was cancelled sort of thing, I know I was able to say, or after it was cancelled 'He's, he's got to have open heart surgery, he's got to have a heart operation'. Now to me I was saying it and thinking 'Hmm, I know exactly what that means' but just like, I remember saying it to our neighbour and she was 'Oh no, that's oh'. And of course they want to say 'Oh that's awful, I'm so sorry' but it, it is awful but they don't really want to say awful because that makes it sound frightening. They were all frightened for us I suppose, or shocked because they've all got children.  

And they're thinking 'What would we do?' [Father' Yeah] And somebody who I've known 20 years or 15 years actually had the courage to say to me and I used to work for her and look after her children as a nanny said, and she's the only one that said it to me but I bet many people thought about it, 'Oh I'm so glad it's, it's not my daughter, I don't know  [Father'  Yeah] what I'd do if it was mine. I can't imagine what you're going through'. And it was actually a relief because everybody was thinking 'Oh, glad it's not mine' but she said it and she said 'I'll help you in any way can but I don't know how to, I can't imagine what I'd do if it was one of my girls'. And she was lovely, she was a great help.

Comment that different parents prefer different ways of communicating with their child's doctor...

Mother' I would probably say 'I have to tell you these things because you need to know but it's very uncommon'. I, think some people who are very clever at their jobs, their bedside manner is not very good because they're, they detach themselves from it. And doctors would say 'Well that's the nurses are there for'. I'm also saying it as a woman but, if he could have possibly said to me, 'Look, [parent's names], 'This is going to happen, this is going to happen, this could happen, this is one of the side effects, this may not, but we need to tell you', but no he had to tell us but a little bit more human perhaps. That's, because we're, we're looking at him, he's holding our child in his hands basically, all of them are, just come out of that doctor's thing and be human perhaps.

Father' But again it is different when he doesn't know us from Adam. I, again I think he's better now because we know him better.

But again, I think the other thing is different people want different things [Mother' Hmm], I was quite happy with him in a way [Mother' Being straight] straight whereas [my wife] would have been a bit more, so it's difficult to actually say to the doctor's well this is what you've got to do or this is what you haven't got to do because everyone's different aren't they? So it must be pretty hard for them at the end of the day. No doubt about it.

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

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. 

The roles within their relationship changed and she found she needed to support her husband.

Father' And, and I couldn't talk about it, I couldn't talk to anyone about it.

Mother' And I think the problem there was.

Father' [My wife] wanted to talk about it.

Mother' [My Husband], the stable one in this relationship, and sensible and calm [Father' Yeah] and that's a fact [Father' That's it, yeah, yeah]. And suddenly he wasn't. [Father' Yeah, that's it]. The day before we went for our appointment he was absolutely fine, saying 'don't worry about it, he's fine, there's no worries, he's, don't worry about'. And he always says that to me and I know there isn't anything to worry about. And [my husband] always mends things, he always sorts things and that's fine, [Father' Yeah] and suddenly this was out of our control. And he always picks me up and suddenly he wasn't there to pick me up. [Father' Yeah]. So I was on my own and my mother was saying you've got to, you've got to pick him up. I thought 'But I can't do, I don't know how to'.

Father' That made me feel bad as well because I knew that, yeah, usually I did sort things out, usually I do stand up and hold everyone up. But I couldn', I couldn't even think about it. And that was it. I mean, yeah, so. It was bad.

They felt relieved when their son was having his surgery because it would soon be over.

Mother' As we walked back round our surgeon was stood there like this, wasn't he, with his hat on, big beam on his face 'Sorry, sorry it took so long. We'll look after him now' like it was, you're just dropping your child off into the nursery. And that to me was fine, absolutely fine. Because I knew he would be fine. I don't know where I, people talk about strengths, they really talk about strengths and where it comes from and I don't know but we then went outside in the hot sunshine, made the calls that everybody who'd been ringing up all day, 'Is he in? When's he coming out? What's happening?'  

Father' Cos everyone else thought he'd had [Mother' That it'd been done] the operation actually and he was finished [Mother' 'No he's just gone in']. So, yeah.

Mother' And I know that I, we then went, we'd not drunk we went to the pub to have some sort of meal and we.

Father'  We were actually quite relieved and, 'cos we [Mother' Cos it was over] could relax [Mother' It was over] it was the most relaxed we'd felt since, probably since we'd been told about it to be honest. I mean I was [um], it was just a case of 'Well, whatever's going to happen is going to happen now' and it'd be over in an hour, wasn't it? Or. [Mother' Well it was...] it wasn't.

Mother' It was 2 3/4 hours. He came out, he came out about half past six. He was out by the time we got back to the hospital and we saw him at half past seven. [Father' Yeah]  But that was, in the end it was very quick but, but the day, what they tell you the day before when you go in is that the day of the operation is going to be long because there are other patients to be seen and so on and so forth. And it takes a long time.

Describe the emotions they had before their son's operation.

Mother' Our appointment came through, fantastic, and then 'Ooh, it's such and such a time, April 3rd'. And then working up to it. In the holidays we could tell very few people go in, I work in a school so what I had to do was leave school, holidays, dealt with it, go back, nobody would know. Because I couldn't talk about it to everybody, I just [Father' Yeah] was too frightened.

Father' I couldn't talk to anyone about it. Not even [my wife], I didn't want to talk to [my wife] about it.

Mother' Because I'm naturally inquisitive.

Father'  Yeah. Every time [my wife] brought it up I just sneaked back into my shell I guess and I couldn't handle it all, not at all.

That was the way you coped with it?

Father'  Yeah. I just had to. I couldn't even, I didn't even think about it to be honest. I tried as much as possible to just keep it out of my mind [Mother' Hmm] and not think about it because every time I did start thinking about it I started panicking and thought 'He's going to die'.

Mother' Because we didn't know...

Father'  And to be honest, with me [Mother' anything about it] it didn't really matter what anybody said. And possibly the only way I might have felt a bit better was actually to hear somebody else who'd been through it. Because I mean the doctors, they said 'Yeah, it's, it's not that difficult.  It's fairly basic' but I didn't really want to believe any of it. 

And you hear of operations going on all the time and major heart surgeries and people come out, no worries. So I think after a while we sort of calmed down, put it into perspective and we were thinking 'We've got our date, we're working up to it'.

And how were you feeling at that time when they told you he needed an operation?

Mother' Frightened. Really, really frightened. He's my little boy, [Father' Yeah] he's going to die. And you told me it wasn't going to happen, he wouldn't need it, he was fine, so angry as well. And immediately, I'm a born organiser and, I needed to get everything sorted out and straight and we had to go on our holiday and the children had to do this and what would happen to, to our daughter because she was a twin and our whole lives would be turned upside down and I was on the ceiling.  

And it's something that I could not plan, I could not organise and I had to let somebody else do it for me. Totally, and then, one, few words, turned my life upside down. And I didn't, it wasn't really until I got into the hospital and saw other things going on that I realised that, put it into perspective. Important as it was, we were going to be all right because we had a family around us and loads, loads of friends who 'We can have this one, we can do that, we can.' But I was frightened and I was angry and scared. I thought he was going to die, because it's an operation. And I do think of, albeit it being a heart operation, if I was told that he'd have to have has appendix out or if my little girl would have to have something done, just as frightened because it's an operation, it's an operation.

Describes how their daughter was looked after and how she coped when her twin brother was in...

Mother' But we were advised, I did speak to her teachers at school to keep her as busy as possible and to keep her routine. And, and everybody was very helpful and obliging and getting her to and from nursery and picking her up and they were very sweet with her at school and, and they didn't go over the top but they just kept half an eye on her. You know, just, 'cos I suppose where's my brother sort of thing'. But she made a fantastic card for him [Father' Yeah, yeah] and she was made to feel very special.

Father' Yeah, it didn't last very long. Luckily when he was out. She was ...

Mother' And when she came in to see him, when he'd just had it done, she'd seen him, fine, yeah that was fine, right my, my friend's over there I want to go and play on the park up on the roof with my friend. And, she, she, she coped with it as a matter of course. Again it's, I'm a very emotional person, too much probably, and I'm thinking how I feel, how, how must [name] feel, 'cos that's how I feel. And I didn't want them separated because I don't want to separate them, they're friends they're, they're inseparable and yet that's how I would feel because I wouldn't want to be. That doesn't mean to say that's how they feel at all. But I'm imagining it. So I'm putting my emotions and feelings into it. And I think [name] had lost her twinkle, she had a nice time and yes she didn't want to say goodbye to me, she was, but once she was gone...

Father' Once she was gone she was, she was OK.  I mean, she...

Mother' She loved being with you, didn't she?

Father' Yeah. She was OK.

Mother' And, and I took her to nursery. We came back on the Wednesday and I took her to into nursery on the Thursday and made a lot of fuss of her of course and, didn't really, they did talked about, you'd hear them talking about it 'Oh, [son] was that when you went to see Mr, was that when you went to have this and what did they do?' And he'd be very proud telling her, but she wasn't left out in any way. She's, she's, she's got a wonderful nanny. So no she wasn't, she, and, and she did cope with it better than I thought she would.

Describes the parent accommodation facilities while her son was intensive care and when he moved...

Mother' We could have all stayed together in a block on the site and probably if he was younger we might have done that but because things were going on we didn't need to. But there were, just along the corridor we had our own swipe key, you booked in and out per night or however many nights when you're going to be in the hospital and two big shower cubicles and you just came in and went from there. And you could go in there with your family as well and sit there. I actually took my son in there as well and we sat and watched a bit of Telly together and it was calmer and it was more relaxed and away from the hospital environment. As long as they knew where you were.

It was really, really relaxed. You booked in sort of when you got there and there was probably 16 beds I think, sort of in rooms, bunk beds. And you made your own bed up and you cleared up after you and there's a kitchen. So it was absolutely brilliant and you come and go and if you needed a rest or you wanted a break the nurses would take care of, while he was having a sleep and you could go and sit. And I didn't particularly. And in fact I stayed in there one night when he's actually had the operation but the rest of it I stayed on the ward. And that was quite exciting because when they come up to the ward at this particular hospital they're in  a special bay where they get a lot of attention, when the monitors beep, they're there. As they get stronger, they move out and I pulled up my put-me-up bed next to him and we'd pull all the curtains round us, tucked the television round the curtains and we were in there cocooned. And, and I said to her 'Can I sleep here?' And they said 'Whatever you want to do, yes, sleep wherever you like. If you want to go anywhere, we'll keep an eye on him' and they brought me a cup of tea and toast in bed with him and.

Father' Oh, it's better than here.

Mother' It was, accommodation was fantastic. So you just need to ask, or they'll say to you 'Are you staying, what are your...'.  When you go for your pre-meds, certainly then ask about the accommodation. I mean every hospital's different but we, you had your swipe key and you could do what you liked.

Surprised to find how calm and reassuring everything was on the PICU. Regretted not having...

 
Father:  Well, again we went into the intensive care room, sat in there and waited and they were sorting him out with his tubes and getting him all dressed and sort of tidied up, tidied up I guess. So we probably sat there for best part of half an hour I guess, wasn't it?  [Mother: Hmm, yeah].  Just waiting and, and then we went in and to be honest I mean it was really, really quite a relaxed room. [Mother:  Very] it was great really, great really and each patient's got an individual nurse and it was, it was really good, really good. I mean Jack was obviously totally spaced out, tubes coming out from just about everywhere, I guess.

Mother: But he had...

Father: He had bits up his nose, down his throat.

Mother: He was on a ventilator which we'd been told from the word go that he would be and of course you say 'ventilator' and to me, I think with you as well you think 'That's helping him breathe, that's helping him live' [Father:  Yeah]. It was helping him breathe but it was, it was sort of doing that bit so that his body could start mending the other bits. It was just to help along a little bit and it's, it's a necessity. But it's not because he's dying. [Father:  No].

Father: It was because he was so dosed up as well wasn't it?

Mother: Yes. Yes.  So that looked a bit horrible. He looked very pale...

Father: Yeah, and he had the lines into his neck as well which I, yeah, I, [my wife] came over a bit funny then and had to sit back for a while and I was surprised because I could handle that. I mean, [Mother: Yeah] I was absolutely fine because to, to me I was on the other side and we could start sort of doing things and [Mother: We'd got through it] sorting it out and we, you know, we were really through. As far as I was concerned it was just a case sorting him out and getting better.

Mother: Having not been to see intensive care beforehand [Father: Yeah] was that OK?

Father: It was because I mean again I'm, I was, I was pretty dreadful, not willing to face up to anything and I, and I, before I thought 'Right, I'll face intensive care when I have to. It's just another thing that if I see it now it might freak me out, so I don't want to know'. And in the end, to be honest, if I had gone and seen it beforehand I would have been pretty relaxed with it anyway.

Mother: I think ...

Father: And possibly, possibly I should have really to be honest.

Mother: But PICU, for the children's intensive care I think is very different from an adult intensive care [Father: Yeah, yeah] and I myself had it in my head it would be like an adult intensive care and you see lots of, I don't know, I've never been into one, but imagine a lot poorly, poorly people in there and sort of road accident victims and things like that. This was little babies I think who'd been premature, there wasn't a little person in there who'd had a heart operation. There wasn't anything in there that was frightening so...
 
Father: And it was fairly well spaced out as well so I mean if there had of been something over there that wasn't very nice…
 
Mother: Very calm
 
Father: you…
 
Mother: Wouldn't know about it.
 
Father:  wouldn't have to look at it.
 
Mother: No.
 
Father: It would have been closed off. Absolutely no problem at all. If anything it was probably better than the wards, to be honest it's, it's probably nicer than the wards.
 

Describe the delay in returning home because of fluid around their son's heart after his open...

Mother' I think it was the Saturday, and I think it was [Father' Yeah] yeah, [Father' Yeah] and I was 'Wow, wow, that's fantastic'. Obviously doing fantastically well and then...

Father' So you were packed and ready to go.

Mother' Yeah, I was, run out of clothes. I can't remember quite what happened then but they needed to do a chest x-ray because of all the fluid that was coming out they needed to check and of course this cough and it showed that some fluid had, there was still quite a bit round the heart so we had another scan on the Monday and, with our consultant and he said 'No there's a little bit there I'm not too happy about, just give another day'. So I was upset by that and he was doing very, very well. And on the Tuesday we had another one and it was still there but we couldn't, it was by the senior registrar.  Obviously they confer a lot but I think they perhaps had different, different opinions on how we should go with is because we live in, over here and it was quite a trek back and forth to the hospital and in the end they decided [my son] and I, my son and I walked all the way round the hospital, so quite a long way, slowly, it took us about an hour, we walked all the way round the hospital.  And just to kill some time really and, he said 'We're not going home, are we mummy?' and I said 'No I don't think so, I think it might have to be tomorrow now'.  

Anyway our consultant and our senior registrar decided that there was no point scanning each day. They obviously accepted that I was quite a sensible mummy because they said if, 'You know what to look, we explained it all to you, we're going to let you go home but you have to come back on Friday for a scan'. And I said 'That's fantastic. I mean, no problem'. But just, [Father'Yeah] by then it was our daughter as well and I think, 'Well he's fine, he's sort of like taking up a bed and doesn't need to'. Because they had, everything else was OK, there was just this bit of fluid which builds up around the heart after an operation and it wasn't draining quite as quickly as, as it should have been. Of course the drain had then come out and it had all been sealed up.