Dental and orthodontic treatment for cleft
- Age at interview:
- Karan is currently self-employed, works voluntary as a street pastor, and is married with a teenage son. Karan is white British.
For a long time I was still unhappy with the way I smiled, or I didn’t feel I could smile openly. And I really wanted to be able to just... you know, I’m a happy person, I couldn’t sort of relax... and have an open smile. And… you know, people, when you first meet somebody, the first thing you do is look at... check their eyes, yeah, you look at their eyes, and then how they smile at you afterwards, yeah, I think so. So if half of that’s not working as well as it could, I think it has an impact. I don’t know, [laughs] but anyway my... so yeah, so a long time, for a long time I wasn’t happy with the way I looked. And I thought... that was it, you know, this is your lot. And... I sold, I... remarried and sold a property, and had some money left over, and said to my dentist, “Oh I’d like to just get my teeth straightened out a bit.”
And I thought I had to pay: that’s why I hadn’t looked into it before.
OK yeah sure.
Because orthodontics over the age of 16 or whatever you had to pay, didn’t you?
So I spoke to my dentist and she said, “Well no,” she said, “you were born with a cleft, weren’t you?” She recognised that.
And, yeah, it was good, and she said, “Well if you were born with a cleft your healthcare is... still with the NHS.”
And I was absolutely shocked.
- Age at interview:
- Alison and Chris are married and have 2 daughters aged 18 and 6 years old and a son of 13 years. They are White British. Alison is a full-time mother and Chris works in airport logistics.
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.
Alison: Because he’d 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?
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?
Alison: But, touch wood, we’re there I think.
How old was he when he first started wearing the brace then?
Alison: Still 12. He’s only had it since October, so yeah.
So he’s 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, he’s always got his hands in his mouth, and he’s 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, he’s broken it two weeks on the trot now, isn’t it?
Alison: All the other times, he’s 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. He’s got to go back again next week, and he’s redesigned the brace.
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 he’s 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.
Alison: Because it’s, I think it must be that that’s the hard thing to get used to.
- Age at interview:
- Mary is a full-time mother and works voluntarily for a cleft charity. She is married with two sons of 15 and 12 years. Mary is White Australian.
Just going back to the bone graft, what is the primary purpose of the bone graft?
It’s for the tooth to cut through where the cleft was, because there was a gap there, isn’t it?
So the tooth is there, but it can’t cut through because there is no bone there, because there was a gap there. So they’ve put, they take a small bone out of his hip and insert inside his gum, so that the tooth is cutting through and is, yeah, so that he can have a... it’s the perfect teeth. And they, he has been looked after by the orthodontist regularly, you know, assessing his teeth. He’s... and he wears the braces so, you know, but that he can have perfect teeth. Because now if you look in, if you look in his gum, sort of it’s like a straight line because he’s got this after the bone graft surgery. Like some other, like my husband, he’s, you know, because he didn’t, they didn’t have that techniques…
His teeth, where he had the cleft, they are not, they are quite they’re not straight. It’s sort of inside, so it’s very much... and for the bite, so he can bite properly.
So it’s partly cosmetic and partly functional, this?
Yes, yeah well it’s very much functional, yes, and also... well I wouldn’t say cosmetic; it’s… function.
Would that be more function then, sorry?
Yeah, yeah more function. It’s yeah probably more function, and so he can have, because otherwise your tooth, if you’re not if you’re not correct in them, they’re not straight, isn’t it? So it can be quite distressing and you know, I mean... children will make fun of you if you have a crooked teeth, isn’t it? And so, yeah, so this is now, he’s under that…
So is he still wearing braces now?
Yes he started that, that’s going to be probably maybe another two, maybe two, two years, maybe they are keeping it two or three years I think. It’s a bit longer process, but he’s... he’s going to have perfect teeth, isn’t it, and he’s going to be…
How does he manage with the braces? You don’t see that many boys wearing braces; you see a lot of young girls wearing braces. And I just wondered how he got on at school with the braces and?
No, no problem.
No, no problem at all; it’s fine, never really worried him. A day off school to visit the team is always a bonus for him so it’s [laughs].
- Age at interview:
- Josh is 17 years old and a BTEC Engineering student. Josh is White British
And you said you had some jaw surgery?
Two alveolar bone grafts.
Oh you had the bone grafts.
OK can you talk a little bit more about those?
Well I don’t know if you can see it, but I’ve got a gap here, got a fairly sizeable one, and... to fill that gap they originally in when I was in Year Five, so quite a few years ago now, they attempted an alveolar bone graft to fill that cavity with bone, so they could then put a tooth in there. ...The bone worked, and they also put a tooth in, they had a tooth in there as well, and they put a weight on the tooth to kind of pull it, pull it down naturally so it seats itself. But that didn’t work: the tooth refused to budge.
So they transferred the tooth from the gap to here. And then last year, well no, sorry, the beginning of this year they attempted a second alveolar bone graft to try and plug that gap, to fill that gap with bone, so they could then put the tooth in there. But that failed as well. And the success rate, once you get past 15 or 16, the success rate drops, the chances of success drop significantly.
For what reason, sorry?
It’s just the way your body... the way your body is, it’s less... less likely to accept... bone: doesn’t like doing it anymore.
OK so is there kind of a critical period then when it has to be done?
Yeah kind of from the ages of, I suppose, 11 to 14, I think, or from what, from what my surgeon from what I’ve been told, that’s kind of the golden, that’s kind of the golden period that they had the higher chance of success.
And how successful was your outcome, would you say?
With the alveolar bone grafts, not very, but they had a, they had a backup plan, so to speak. So that, so instead of using a natural, so instead of using my own teeth they’re putting a bridge in there, so ignoring the bone, the gap in the bone completely and bridging it.
Oh really, yeah?
So you were about 14, yeah?
When I had the first one I was... 13 and the second one I was 16.
Can you remember what the recovery period was like?
The first one was quite long. ...I was in hospital for... four days and then... not allowed to do anything for two weeks. The second one was a lot better: I had a day in hospital, day or two in hospital, and then it was just, “Take it easy.”
OK and did you have to eat special food or?
Well yeah you’re... well yeah I was on a soft diet, so... soup. Well actually for the second one I was on no food for five days, which was... OK [laughs] after a fashion.
Not the best thing for a growing boy.
OK and how did it affect your face, your appearance physically, having this surgery?
It’s hard to tell: no difference.
No because it just, it just contained my a very small layer of my jaw, so hasn’t made a huge impact. There’s no... yeah there was no... you can’t tell it was there.
OK and did it affect your speech in any way?
Not really, no, just normal. There was no... no big difference.
- Age at interview:
- Lizzie is White British and a university graduate. She is married and is currently working in call centre. Lizzie was born with a unilateral cleft lip and palate. She has a younger brother.
The... first treatment I remember, I remember sort of getting braces and everything like that from about age 7. I had quite a lot, I had, you know, train tracks and... retainers and everything like that to sort of even up your teeth. The first... the first operation that I remember was just having a few teeth removed when I was about... I think I must have been about 7 or 8.
And then it sort of went on to, you know, jaw ups and, you know, most surgeries that most people with clefts will have.
So did you have treatment throughout your teenage years as well or?
Yeah I mean it was mainly I had quite a long break between my first bone graft operation when I was about 10 or 11 and then it wasn’t until I was about... 17 that I had my last, that I had my next op. Which... I still had treatment in-between in the fact that I was an outpatient at [hospital name].
So I imagine you had regular check-ups and monitoring of teeth and such?
Yeah, yeah and my surgeon just wanted to sort of see how I was doing, how I was progressing and you know, what the next bout of surgery would be.
Last reviewed June 2017.
- Age at interview:
- Natalie is White British and has a daughter of 19 years and two sons of 16 and 13 years.
And we came away from the orthodontist last week, and he had said it’s really difficult to tell at the moment what further operations he might have to have because we’ve got to wait till he’s fully grown. In terms of his teeth, they are a right mess at the top, and he’ll have to have a brace for quite some time. And I don’t think that fazes him, in that sense. I don’t know if it makes a difference that he’s a boy and he’s quite, you know, tough, in a way, I think he is.
You see more boys wearing braces these days as well.
Yeah oh that doesn’t really bother him. And he could have the brace for quite some time. But the orthodontist was talking about this osteotomy operation that he may have. Because I didn’t appreciate, you know, the whole mechanics of it, but having had the cleft, the top jaw can end up sort of, in profile, being flatter. And, and then they have this osteotomy, which looks quite a horrendous operation. But, you know, but that did give me an opportunity to talk to him about that. And he’s obviously old enough now to, you know, and I said to him, “It will come to the point where you can make those decisions, you know, at 18 it’ll be up to you.” And I say to him, “Well what do you think, do you think you’ll have your nose rejigged?” or whatever expression I use.
- Age at interview:
- Ryerson is a university lecturer, is married and has no children. Ryerson was born in Canada but lives in the UK.
Oh I had a dentist tell me when I was a kid, “Looks like God took all your teeth in a shaker and then just threw them all in the mouth.” I had teeth coming out from all different directions, out of order.
I’ve got caps and crowns and... the problem is that I’m getting... the gum line and the bone lines receding up along the cleft. And finding a dentist that has a clue on what can be done other than, “Well we can talk about dentures or something,” which is the very last thing obviously I want... has been a challenge. That, the dentistry thing, has been an ongoing... headache. Yeah, and not just here: that’s always been the case.
But... yeah it’s that lack of... the sense of: oh a cleft palate is something you deal with as a child, once your teeth are in and they’ve got them more or less aligned then, ‘poof’, you’re fine, the same as everybody else. But that doesn’t... reflect the fact that that’s not the case and you’re going to have problems, particularly along the cleft lines, often for... you know, endemic, I guess.