Interview CH20

Age at interview: 3

Brief Outline: Toby was diagnosed with Tetralogy of Fallots and mild branch pulmonary stenosis at six weeks old. Treatment: he had a catheter at 6 months old and corrective open heart surgery at 8 months old. Current medication: none.

Background: Diagnosed at 6 weeks old. Parents' marital status: married. Occupation: Mother-Special Needs Teacher, Father-Special Needs (Night Care). Other children: one older child. The family live 2 hours away from the specialist hospital.

Their GP noticed a loud heart murmur at his routine six week check-up. They were referred to the...

Mother'  You know, a perfectly normally pregnancy, shot out in six hours, which compared to his brother was very quick, and I mean, I always come home the same day but you made me stay in, [Father' Hmm] Just to make sure everything was ok. And when the paediatrician looked at him in the morning, when he was like one day old, they said   that he felt a bit cold. But I thought it cold in the ward and just didn't think about it again and went home. And then he was absolutely fine, wasn't he? [Father' Yep] Breast-fed and put on 2 1/2 pounds and we took him to our GP, expecting the GP to say, you know, 'isn't he wonderful' whatever, and well you remember, what [Father' Hmm] what he did. Do you want to say that bit?

Father' Well only the fact that he, when he checked, checked his heart beat, you know, with the stethoscope, he did say, 'Did the hospital say anything to you?' you know, we said no, the paediatrician looked at him and said home you go. And he said, well I think there's a bit of a problem here. He said, there's a murmur on Toby's heart, he said it's probably the loudest one I've ever heard and he said really, you need to go and see a specialist quickly, you know. 

They found it hard taking on board information when they were told their son's diagnosis but when...

Father' But at the initial stage. The first, I mean, you feel, you know, a lot of the things just go over you're head to be quite honest [Mother' Hmmm] because your heart's beating yourself, your own heart is thumping wondering what the doctor going to say to you, you know and you don't take half of it on board. You know when we came away we were saying, did he say [Mother' Hmmm] what did he say again?  

Mother' I suppose it's a good thing to have two of you at least because what one person has missed, the other one will perhaps pick or if you interpret it a slightly different way. They might say no I don't think he meant that, he meant this but and you, you go away but you haven't got anyone to phone up and clarify things or anything like that. So like [my husband] says they are too busy but just get given this diagnosis or whatever and then you know, left 'til your next appointment.

Father' And it's that space between the two appointments you know, all the questions are there but you haven't got any answers and that's really difficult. You know, when you know you've got to wait another maybe a month or two weeks, however long even if it was only a week, you know, when you need this question answered and you need it answered today. It's very difficult to wait that time you know, so I think don't be scared to write things down. It is, you do feel a bit silly but given, given it over again I would have taken notes. You know, the terminology that the GP or the specialist was using, I would have written down.

Mother' I think at one point we did in between appointments, write a list of questions and then I didn't ask them. You know, you just, you've waited half hour or an hour for your appointment and you know, we were there with like a three month, four month old baby, who was hungry or was fretful, or whatever and so we didn't.

Their son hates taking his medicine because it was forced on him as a baby.

Mother' Well as soon as you get him, sort of tuck one arm under here and have the syringe, he'll start crying. But he has sussed that when he cries, he gets it and he will now cry with his mouth closed. Ooh. [Father' Laugh] Just recently you had he had a high temperature and he had some antibiotics for it and we just, we had to hold his nose, didn't we? 

Father' Hmm. So he'll have to open his mouth 

Mother' So he'll have to open his mouth because he would just, he was crying but he was keeping his mouth closed.

Father' The old fashioned way, we had to squeeze his nose.

Mother' Yeah and when there was two of us it was OK. When there was just one of you, it was really, really difficult and like his brother had to hold his hand so he couldn't reach and get up and we've had I've been covered in medicine before where you squirted it in and he blaah, you know, spat it back at you and so because of all the early experiences. I mean, his brother is absolutely perfect isn't he? You know he would take any medicine, would take it on a spoon or whatever but he just, he would probably always hate it I, I think.

Father' It's because it was forced upon him for such a long time.

Initially found the terminology used by doctors difficult to understand and didn't feel able to...

Father' There was a lot of  terminology on the letters that we received, obviously we're going straight for the dictionary. [laugh] 

Mother' Yeah and they weren't in the dictionary, were they?  And things that you didn't know [Father' Right] And they were always feeling for his liver and I've never know why they felt for his liver [Father' Hmm] and they would say in the report, two centimetres, something, something and you wouldn't know what that meant [Father' No] why should his liver be there and his what was it, hands and feet are not clubbed, well what did that mean.

Father' Terminology to the doctors and the specialists is everyday language, [Mother' Yeah] and when they're talking to each other sometimes, you think they're talking a foreign language. You're just sitting there not knowing what they're talking about and they come, they use numbers and letters and...

Mother' Yeah, and like the heart beat things and two fifths and did,...oh, I don't know, it was just.

Father' With all the good will in the world, they haven't got time, when they've got 20 other children to look at. They haven't got time for you to keep stopping them, interrupting them, although you want to because you want to know all of the details, what does that mean? That the doctors and they're under such pressure to get through that day. So you can't keep interrupting them because so you're stuck in a dilemma, that you want to know what all these things mean because they don't, you don't get a piece of a paper, which would be nice, a list with all the terms on it so that you could look.

Mother' I think they are quite, I think the new heart book, 

Father' Yeah, yeah, but...

Mother' It's got those in.

Father' ...but when you're just going into it, in the first time, you haven't got the heart book, you only get the heart book afterwards sort of thing, or during. On your first appointment, it would be nice to have a little piece of paper that tells you all the things that they're talking about. [Mother' Hmmm] You know the terms.

Mother' But they often, like, tell you don't they to take notes or something about what they're saying but you feel too silly to do something like that, sitting there writing it down, but you forget don't you, what you said... and then...

Father' Well a lot of the things are a blur.

Mother' You just perhaps are so shocked by what they say; you forget to ask what it means or something like that.

She had to take holiday leave when her son was having his operation and make up her hours and...

Mother' And when I, when I say to people now that you know the time I had off with Toby for his operation and afterwards, I had to take as holiday, their jaws just hit the floor, you know. Not only did I have to take it as holiday, I had to make up teaching hours for the year. Ha. It was just like, it's a shame I can't say the name. 

Father' Yeah well, you can't, you can't [laugh].

Mother' But isn't that incredible? I mean at the time, when I went into see the personnel office with my boss, and he said, oh well, we're prepared to give you two weeks holiday and then we'll give you unpaid leave. You just don't argue because you're mind isn't on the logistics of you know, OK I'm gonna have to make up teaching hours or you know, or whatever. You're almost not there, you, you're back with your son at the hospital or whatever. If he'd said to you, OK you can take the time off but I'm gonna cut your arm off when you come back. You would've just said yes because you weren't really thinking about it and you know, in hind sight, if I'd just gone to my doctor and said how can I possibly be expected to work through during this period while my son's in hospital. The doctor would have said, you know, here's a certificate for as long as you like. And when, after the operation when we thought Toby was gonna have to go back in because of the fluid round his heart I went and got a certificate and he didn't have to go back in then but...

That's probably something I'd you know, if parents are having trouble with employers, I'm sure a GP's, I mean what GP wouldn't sign you off? for something like that.

They found it supportive to talk to other parents and see other children at follow-up...

Mother' Even in the outpatients when we went up for outpatients you'd get chatting to people, wouldn't you? [Father' Hmm], and I can remember, I can still remember this 3 year old boy who the parents said, yeah he had heart surgery and whatever and whatever his name was, I don't know what it was, he was wearing a yellow Pokemon T-shirt, do you remember? And they said 'Show them your scar' and he went 'Hmm, look at this.'

Father' And he was so proud, you know, he was showing everybody his scar.

Mother' No, and it was, that was fab, so'

Father' So it wasn't something that should be hidden. He was [Mother' Hmm] you know, he's special, he's got a [Mother' Hmm] scar that nobody else has got. Well, obviously others do have but this, this boy had been made to feel proud, you know, that he, he's got a nice scar and he, he was showing everybody, wasn't he?

Mother' Hmm, so really they, that was the best support we got, when you, you're in hospital and the other parents we did actually swap phone numbers with a couple of them but just never got round to, to phoning, you know. 

They explain their feelings when their son's operation was cancelled three times.

Mother' Unfortunately what happened to us is that the operation got cancelled three times.

Father' We were sent home, we were. 

Mother' That was'[Father' Yeah, we were] Out of everything that was just [Father' Even] the worst.

Father' Even, we'd had pre-med [Mother' Yeah] you know. And he, he was really sort of lethargic, lying in the bed half asleep and they come and say 'Sorry it's cancelled'. You know.

Mother' We'd, we'd had and my sister-in-law had come down from Cambridge to look after our other boy. So she'd made that journey. I'd, because I teach, I'd arranged cover for all my lessons. My boss had, you know, hired a stand-in teacher for all the lessons and we got up to the hospital, we settled in, we slept the night, he had his pre-med and then that was it, no, you've got to go home again. 

And, was the next, did we go up again or did they cancel on the phone for the next few times? I can't remember.

Father' No, we, we did go up again.  

Mother' So we did the same thing like the next Monday and you'd spend, I think the weekends were the worst, weren't they? [Father' Hmm] 'Cos you kind of like got through the week and then you knew he had to be admitted on the Monday or he was hopefully going to be admitted on the Monday and you'd get a letter - wouldn't you? - Saying 'Please come on Monday, blah, blah, blah'. [Father' Hmm] Wouldn't you?  'Please phone on Sunday to see if there's a bed'. So you'd sort of spend all day Sunday worrying [Father' Hmm] you know and it was 'Ohhh'.

Father' You would have a sleepless Sunday night because you were, you knew what was going to happen. But it, it was, it, three, it was three times - wasn't it? - it was cancelled.

Mother' And you'd phone up and they'd, or you'd be, I mean I can remember when one time we'd gone up there and we'd slept overnight and hadn't, we hadn't slept at all 'cos he'd been awake hadn't he through the night or whatever and I'd fallen asleep in the chair next to his bed. But you were awake and the, the surgeon or whoever came round and said 'We've cancelled it'. And I was just laying there, I was in the chair asleep - wasn't I? - And I was just, when I woke up and you told me I just [Father' We're going home...], you don't know whether to burst into tears or to be really angry and you sort of felt both and you know, also when you travel to and from on the train you sort of look to everyone else just getting on with normal lives and there were you taking your son to, you know, to have his heart operated on and that was the time with all the train strikes as well, wasn't it? [Father' Yeah] We stood on Victoria Station once with, you know, a 6 month baby and a 3 year old boy, you know, waiting for a train and...

There was no-one they could ask to baby-sit and were planning to go away together for the first...

Mother' And when you're down you just say you're down. [Father' Yeah] And it was funny because like when I was down you'd usually be OK and vice versa. And, you know, if you've got a good relationship like that then you can help each other.

Having said that I think we asked each other so much at that time [Father' Hmm] so that afterwards when things were better then we had a bad time, didn't we? You know, it just, I don't know, all the stress that we'd been through together you know, we pulled through it very much together and then afterwards we had, you know, sort of, I don't know, a few months that, I don't know, because for some reason, just a reaction I guess to going through all that. You know, I think things might have been a bit easier, I mean, because we always had, we were always taking [our older boy] with us because there wasn't anyone to leave him with so hopefully other people would be luckier to have family to, that would look after other children and maybe even give you a break every now and then. I mean, we're going away next month, aren't we? [Father' Hmm] Me and you, for the first time in five years, you know. 

Father' Just us.

Mother' Yeah, just one night.  

Father' Yeah, just us.

Mother' But that's the other thing like when your child is ill like that you can't really ask anyone to baby-sit unless you've got a nurse friend or something because if we'd gone out and something that happened to him we didn't, it wouldn't have been fair to the person we'd left him with. So actually when he had his operation, I think that was the first time we'd been on, we'd left him, ever. You know, because you just couldn't ask anyone to look after him, so if you've got sort of people to rely on then it'd be good.

Describes what it was like on the ward.

Father' But it's, it's a, it's a strange environment being on a children's ward like that because there are so many monitors [Mother' Hmm] you know, that, so many monitors in each of the wards, or each of the rooms there's like half a dozen nurses. You can understand why they do call you, you know, to come and look at your child during the night because they've got more important things to do than sit and maybe cuddle a, a baby for half an hour for when it's awake. You know, they do do that when they, when they've got the time, they, they will sit and nurse a baby just cradling it. But it is a strange environment, isn't it?  With all the monitors going off, bleeping and...

Mother'You, when you're in hospital you totally forget about the outside world and probably more so because it's a children's ward if ever there's a telly on it's on Thomas the Tank Engine or you know something like that. So you don't even hear any news and you know we were in there I think for 8 days weren't we [Father' Hmm] and the outside world just ceased to exist. We, I think we walked along the King's Road once or twice, you know, just for some fresh air but...

Father' When we came home there were loads of things that had happened, I can't remember what they were, but loads of things that had happened in that week, you know, and we hadn't got a clue what was going on. We were...

Mother' You forget, you know, you forget that, you know, your work mates are still at work doing work and other people you know it just, you're just in there in hospital and that's your little world.

Father' Your own little cocoon, isn't it?

Describes being told the risks of their son's operation and signing the consent form.

Mother' Another horrible thing is when the anaesthetist comes to ask for you to sign a consent form he has by law to tell you all the things that could go wrong. So he says there's 1% risk of stroke, 1% risk of this. There could be organ damage, there could be this, there could be that. And you're sitting there going 'Ohhh'. You know. And I know 1%, you know, isn't very much but, you know, as nice as he was you sort of, after you've signed, I mean what's your alternative, that you don't sign a form?  After he walked away you'd sort of go 'Ohhh' you know and you would have all that going through your mind all the time.

Father' But again you, once you've signed the form and you've handed him over sort of thing you, it's [Mother' Well it's] down to the surgeons then, you know, and there's nothing you can do - is there? - but just wait.

When their son was having his operation they went to the nearby museum. They advise other parents...

Father'  I know that when he was in surgery we went to, just for something to do, we went to the Natural History Museum and we walked around there, oh I don't even remember doing it. You know? I can remember approaching the building but I can't in all honesty remember walking around, can you?

Mother' It was a bit surreal because they told us that sort of they would spend the first hour of his operation literally just getting all the tubes and things in place perhaps for after the operation, you know all the things to put drugs in and whatever and you sort of, and I mean we walked round like this, didn't we? [Father'  Hmm] You know, looking at our watches all the time and just sort of, I don't know, I mean we could have sat on the ward but  [Father' No] I just couldn't bear doing nothing. I had to do something  [Father' Yeah] that was...

Father'  It was anything to occupy the time, wasn't it?  

Mother' Hmm. We was just wandering around in a daze really.  

Father'  Yeah.

Mother' And it's very weird to, looking at your watch all the time and try and imagine what's going on. 'Who are these people leading perfectly normal lives or on holidays or whatever?'  And, you know, somewhere half a mile away [Father'  Hmm] you, your little 6-month baby has got his chest cut open [Father'  And it's] you know.

Father'  It's only a very, very small thing but it's not always a good idea to ask how long it's going to take because if you come back as other people had done and the child was still down in surgery then straight away you'd think something's wrong  [Mother' Hmm] you know. 'What's wrong, why is it taking so long?' So I would say to anybody that's going to go through similar, don't ask how long its going to take because if, if you come back from, as we did, sort of if you come back and he's not back from surgery then you straight away, you put yourself under pressure again thinking 'Why not?' you know 'What's gone wrong?'  

Mother' Well what they did they took, the nurse took our mobile phone number and said that she would give us a ring, you know, if we needed to come back.  

Father'  And that's the best thing.

Mother'  Which I suppose I think, yeah.

Father'  Yeah, just accept that it's going to take [M' Yeah] however long it takes, you know.

When their child was not intensive care they slept next to the chair or in the day ward which she...

Mother' Usually either we'd both stay or one or other of us would stay and you slept where you could which sometimes was for you in a chair next to Toby [Father' Yeah]. There was a day ward where if that wasn't being used by a doctor or something you could go and sleep in a bed in the day ward. There was a room that we got one night. One night we had an isolation room that we tried to sleep in 'oh that was a nightmare wasn't it and that was the night [Father' Hmm]. But we didn't actually get a room, like a parents room until he was in intensive care and then we had that for I suppose about 5 nights.

Father' Yeah, there's, there's, there's a block at the hospital.

Mother' There's only so many...

Father' With rooms for parents that stop in long term. [Mother' Hmm] you know. You get sort of like your own room allocated to you but they're like chicken's teeth, with everybody, everybody wants one but nobody can get one. And really, you're very fortunate if you get proper accommodation in the hospital.

Mother' I think newborn babies, I think their mums get one because obviously they're really tired so there's more demand than there is beds and often mums would just get a mattress and sleep next to the child.

But if you could get away from your child in the ward I mean for me I needed to get away. You, you weren't so bothered. You would have slept in a chair [Father' Yes, yeah, to stay, stay with him] didn't you? Next to him. But I just needed to go somewhere and sleep.

Describe the quick recovery of their son and of other children on the ward after their open-heart...

Mother' Another thing that just totally amazed me 'cos he, he had the operation on Tuesday and was in intensive care. Then in the high dependency on Wednesday and then back on the ward on Thursday and when he was on the ward they were giving him his medicine, and they were giving him Calpol and I'm saying, 'hang on a minute, this child's just had his chest cut open, he, surely he needs morphine or something like that'. And they said to me 'Well, is he in any distress?' And he wasn't, he was, for sort of all the time we were in hospital, which was a week, he wouldn't go onto his chest because he'd been crawling before that, hadn't he? [Father' Hmm] And he wouldn't, he, he obviously hurt but not really to the point where, you know, he, he was never in distress. And we were just totally amazed really and, so we brought him home like the, the following Tuesday and he was practically normal from then really. I mean you just had to let the, the scar heal. They had a dressing on it for a day and then just left it open and then just, you know it was, [Father' 'cos] as if he had cut his finger or something [Father' Yeah] it was...

Father' The, the ward adjoining the children's ward was adults having similar sort of operations, for other things maybe but similar operations and it just made me laugh that these adults that knew everything that was going on were really 'Oh I do feel sorry for myself'.

Mother' They were milking it.

Father' And there were children in there [Mother' Yeah] that had had open heart surgery two days before [Mother' Yeah] they were running around, playing, they were in the children's play area [Mother' Yeah] Not a problem, you know. They, they were carrying on as if nothing had happened. They really were, two days after [Mother' Yeah] they'd had their operation. And these other people, middle aged people going 'Oh, dear I do feel sorry for myself'.

Mother' The, the surgeons obviously did a good job because two weeks afterwards when he was at home his three-year-old brother stood on his chest. Do you remember? And [my husband] sort of came in and he saw him standing on him and he thought that his chest would have burst open or whatever. But nothing. He, he...

Father' I couldn't believe my eyes.

Mother' He was quite, the rate of recovery and everything like that is just incredible. He just, he got over it so quickly. If anyone could have told us that, you know, it's, it's this huge surgery which I'm sure I'd be off work for a year if I had that done, you know. And he was...

Father' Well that's, that's the only thing that you've got. You think 'Well if I had it done, you know, how, it would be months before I felt right again' [Mother' Yeah] and you see these children 48 hours later and they're running around [Mother' Yeah] and they, the...

Mo