Alison: And I think when he had his brace fitted the thing that he noticed was because of his speech, because he thought it was a lot worse than it actually was. And at one point he refused to speak, and he wouldn’t eat. He wouldn’t eat because he was absolutely petrified of breaking the brace.

OK.

Alison: Because hed initially been told that, If you break this you must come back straight away. It is really important, and that sort of worried him, clearly, and he, to the point where he just refused to eat, which for me was an absolute nightmare. It started off he would eat something at home but wouldn’t eat anything at school. But then after that it was the case of he wouldn’t eat anything, full stop, because I think at one point it actually came out, didn’t it, the one part of it?

Chris: Hmm.

Alison: And it was the case, Well I hadn’t eaten anything major, so… if I don’t have anything I can’t break it. So that took a little while to get him over that, didn’t it?

Chris: Yeah.

Alison: But, touch wood, were there I think.

How old was he when he first started wearing the brace then?

Alison: Still 12. Hes only had it since October, so yeah.

So hes still getting used to the idea really, yeah.

Alison: Well the biggest thing is because it’s on the inside of his mouth, and he said it’s hard because he can’t touch the roof of his mouth, so of course he messes about with it with his tongue, hes always got his hands in his mouth, and hes always chewing his thumb. Before obviously he had the brace he was always doing it, so it’s quite difficult for him to stop doing it, and… that doesn’t help. I mean he broke it last week… yes.

Chris: Those big dog collars.

Alison: If only.

Chris: From out the vet’s, oh fantastic.

Alison: Well I think his orthodontist would like that because

Chris: Be amusing just to see him like in one of them anyway.

Alison: He wasn’t amused when he broke, hes broken it two weeks on the trot now, isn’t it?

Chris: Hmm.

Yeah.

Alison: All the other times, hes broken it three times, but the other two it’s just come out. The last time he broke it, he actually broke a piece off it so he wasn’t impressed at all. Hes got to go back again next week, and hes redesigned the brace.

OK.

Alison: Although he has said that he now has enough space for the operation to go ahead, so provided nothing sort of happens in the meantime it is still all systems go. It’s just the case of making us… I think he said hes going to put less metalwork on it so as it’s not so sort of prominent perhaps in his mouth, and it doesn’t irritate him as much.

Sure.

Alison: Because it’s, I think it must be that that’s the hard thing to get used to.

Alison: I’ve still got that worry as to what I’m going to do with the little one. Because we have been told that on the day of the operation I’m obviously allowed there, and I will stay with him and sleep over, dad can come whenever he wants to, but his siblings can only visit certain times. So of course that is another implication down the line, the case of well we are that distance away from the hospital.

And you can’t leave your kids at home.

Alison: Exactly, and that was my issue with the school: I can’t sort of be in two places at once, I can’t leave her in school and then think, Am I going to get back in time to collect her from school? And I can’t leave before she goes to school and say, Oh just make your own way, sweetheart, don’t worry about it. It doesn’t… it doesn’t make sense.

Chris: I mean they go, Oh weve got after school clubs, and stuff like that.

Alison: But that just adds to the expense doesn’t it?

Chris: Well that’s the thing, isn’t it? It’s alright if you can afford it, but by the time weve done that a few times it’s suddenly [laughs].

Alison: Hmm.

Chris: it could be a very expensive, you know.

Alison: Hmm.

Yeah I think, from talking to other families, the appointments is a major point of concern.

Alison: Hmm.

One, the time, the logistics of getting there, and the cost also

Alison: It’s not been quite so bad for us because, appointment-wise, certainly since weve come up here, when we were seeing the consultants down in the Midlands before we moved, they knew how far we had to come, so they always made us the first appointment of the afternoon in the clinic.

So they’d take that into consideration?

Alison: Absolutely. And here it’s been, I mean he has an appointment next week, for example, to refit this new brace, and they’ve said that although his appointment’s on Tuesday, if they can get the brace made quicker, can they ring us and can we go in sooner? And I’ve said, yeah that’s not a problem, provided we can have flexibility on the time of the appointment. Because provided I can be there sort of between half past ten and one, that’s fine, because the little ones not affected.

Yeah.

Alison: But if they, I mean we did have a first appointment at like nine o’clock in the morning, which we soon learnt that that was just a no go. But they have been really good, and they will, you know, make the appointments around you if they possibly can. Obviously there is a bit of an issue because weve only got one car, so it’s still the case of have to drop my husband off to get a lift to work, or I have to drive him to work first then come back. But you sort of get used to that, that’s

So theres a lot of planning involved, yeah.

Alison: Yeah but, to be fair, that’s not just because of him having a cleft, that’s just… you know, life with children isn’t it? Theres always something somewhere.

Chris: Yeah.

Modern family life.

Alison: Yeah exactly, you work round everything. So I certainly wouldn’t, wouldn’t say it’s been an issue for us.

OK so did you find that the nurse was knowledgeable, did you find when you were on that ward that you had enough information?

Alison: I don’t think at that point they knew that much. It was hard, because I was still on the delivery ward at that point, and hed gone to special care, so we were completely apart. So that was the hardest part. It was only the following day when we got sort of reunited then, didn’t we?

Chris: Hmm.

And at that point we obviously saw the cleft nurse, didn’t we?

Chris: Hmm, hmm.

Alison: And she explained everything. And she was, she was really good, wasn’t she? She helped a great deal.

And it was good to sort of have that contact so quickly. Because we certainly didn’t expect that, did we?

Chris: No.

Alison: But then it was completely new to us. But for her to travel over, and as soon as she knew it was a case of, Yeah OK shes coming straight away, shell talk you through everything. And then from that point, they’d already started feeding him, but then obviously I took over. And then I came actually onto the special care ward, so then overnight I could feed him, and once I felt confident we could come home. So we weren’t on there for very long, were we? Just a couple of days, I think.

Chris: That’s right.

Alison: So yeah, it was fine. And they were really, really good.

Chris: They were really good, you know, at least you felt like you were getting the support you needed.

Alison: Yeah.

So you did feel supported?

Alison: Yeah.

Chris: Yeah, yeah.

Alison: I mean I’d been told by the cleft nurse that obviously when people see him for the first time they may have a reaction. And she said, That will be really hard for you because you’ll see that reaction and you’ll think that that’s them thinking, oh gosh, you know, your baby’s weird or, or whatever. And she said, It’s not; it’s just that reaction to somebody seeing someone for the, you know, first time, they’re not sure what, etc. And she said, Before someone actually sort of looks at him, just mention and say actually he was born with a cleft, and she said, and you’ll be surprised at the reaction at that point. That you’re bound to sort of have people, Oh yes, I knew such and such, and they’ve got a cleft, and their reaction was completely different then.

OK.

Alison: But I was very conscious of people looking at him and I was… a bit concerned about your mum and dad coming, wasn’t I?

Chris: Hmm.

Alison: Because… your mum sort of tends to speak and then think afterwards [laughs].

Chris: Yeah.

Alison: And that I couldn’t… I couldn’t be there, could I? I had to go

OK so you had to have a strategy, so to speak?

Alison: Yes, yes.

Yeah OK.

Alison: Because I couldn’t, [laughs] at that point I couldn’t. You handled everything much better than I did anyway, didn’t you?

Chris: Still tricky though.

Alison: Yeah I don’t doubt it.

Chris: I mean… horrible feelings… you know, you [laughs] you go round the shops or anywhere and, I don’t know, but maybe it’s being a man, I don’t know, but phew, you know, everybody looks at the baby and… hed got stitches in his face.

Was this?

Alison: That was after his

Chris: After his operation.

OK so were talking now after his first lip repair?

Alison: Hmm.

Chris: Yeah and… and various people just look at the baby and then look at me. They might not have been, but it just made you feel… theres somebody there thinking, ah, I’ve done that to the child or, you know, Did he drop the child? I don’t know, but I mean… you can’t stop thinking that way.

Hmm and did you get any hurtful comments at all from people?

Chris: I didn’t.

No.

Alison: No, I mean there were whisperings and things.

Chris: Yeah.

Alison: If you were out shopping and you were in the lift or, you’d hear little, Oh God, can you see that little boy’s face? or, you know, things like that. And… I think that was hard initially to deal with but over time you get used to it and you do toughen up. But it’s that initial… because you’re not expecting it, and you don’t know how to handle it is quite hard, isn’t it?

Chris: It is.

Alison: Because, to you, hes your perfect little boy.

So just to summarise the treatment that hes had so far: the initial lip repair and the palate, that was all within his first year of life?

Alison: Yes.

So what has he had subsequently?

Alison: Well we… he wasn’t due to have anything else. They said that they thought he may need a bone graft operation a few years ago because they didn’t know whether or not the bone had fully grown etc. So it was the case of, Well just watch and well wait. And at that point he was still under his consultant in the [Hospital name].

And it wasn’t until last year, about Christmas time, wed sort of, because they kept on saying, we only went every couple of years at that point for a check-up, and it was the case of, No, I think hell be OK. I don’t think hell need this. And obviously it was a long way to travel just for a ten minute, you know, Yeah, think hes fine, don’t need the operation. So at that point we discussed it and we said, Well we may as well transfer him to the consultant team up here.

Wed heard that, you know, their team was, you know, really good. We were a bit reluctant because of obviously the treatment hed had from the others was superb.

Chris: True yeah hmm.

Alison: So again it was just that leap of faith.

Chris: Yes isn’t it?

Alison: Yeah, we didn’t know anyone else.

Chris: If someone has done a good job you don’t want somebody else coming along and screwing it all up.

Alison: Yeah and that

Chris: You know, so

OK so if it ain’t broke don’t fix it, kind of thing?

Chris: [laughs] You know.

Alison: Yeah, yeah and it was only a, a visit every once in a while, wasn’t it?

Chris: Yeah, yeah.

Alison: But because of him being at high school, it was more time out of his school, so it was a case of well, for a quick check-up, we may as well just go to these guys. And obviously we thought the first appointment, I think it was about October last year, was just going to be a meet and greet and, Yeah, see you in a, you know, three years or so.

OK.

Alison: But [laughs]

OK yeah, I remember you explaining this in your email when you first contacted me?

Alison: Yeah, that’s right, we got told, No actually he does need the bone graft operation. And they would have done it when he was aged 8, between 8 to 10. So it was the case of, We need to do this as soon as possible. So from that point on it’s been a bit of a roller-coaster having his brace fitted so that they can make the space for her to actually do the work that she needs to do, which for him has been really difficult.

So hes now in the care of an orthodontist, is it?

Alison: He has an orthodontist, yes, up here again at the hospital and he has obviously a new plastic surgeon now.

Yeah sure.

Alison: So we will… weve only met her once but… we are due to meet again beginning of April, which hopefully then well find out a date for his operation.