Cleft Lip and Palate
Dental and orthodontic treatment for cleft
Children born with a cleft lip and/or palate may develop dental problems and require regular appointments with an orthodontist (a dentist who specialises in the correction of teeth irregularities). Orthodontists work within cleft services in the U.K. Children born with a cleft are more likely to have fewer teeth (hypodontia) or extra teeth (supernumerary) than children without a cleft. They are also more likely to have a narrow top jaw, perhaps because of previous surgery, and the teeth that do grow may become crowded and crooked. Crooked teeth can be hard to clean properly and so a child born with a cleft may be more likely to get tooth decay. Children born with a cleft lip and/or palate will receive orthodontic care within the ‘Cleft treatment pathway’ until they reach 21 years of age. When all of the adult teeth have come through or erupted (usually in the early teenage years), braces may be fitted in order to ensure that the teeth are straight. People born with a cleft lip and/or palate who didn’t have orthodontic treatment when they were young can still benefit from having orthodontic treatment as an adult: this treatment is provided by the regional cleft services in the U.K. (see ‘Adult cleft services’).
Karan was born with a cleft lip and palate and was informed she would be able to receive orthodontic treatment as an adult within the NHS.
Karan was born with a cleft lip and palate and was informed she would be able to receive orthodontic treatment as an adult within the NHS.
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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.
That’s good.
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.
Alison and Chris explain how their teenage son found the experience of wearing a brace. He was embarrassed to speak and refused to eat because he was scared of breaking it.
Alison and Chris explain how their teenage son found the experience of wearing a brace. He was embarrassed to speak and refused to eat because he was scared of breaking it.
Age at interview: 39
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OK.
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?
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, 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?
Chris: Hmm.
Yeah.
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.
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 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.
Sure.
Alison: Because it’s, I think it must be that that’s the hard thing to get used to.
Josh describes the dental treatment he has undergone as a teenager including two alveolar bone grafts.
Josh describes the dental treatment he has undergone as a teenager including two alveolar bone grafts.
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Two alveolar bone grafts.
Oh you had the bone grafts.
Yeah.
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.
Right.
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.
Does it?
Yeah but…
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?
Yeah.
Hmm.
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.
Yeah OK.
But yeah.
Not the best thing for a growing boy.
No.
OK and how did it affect your face, your appearance physically, having this surgery?
It’s hard to tell: no difference.
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.
Lizzie recalls how she needed to wear braces as a child and how the treatment progressed with bone grafts to improve growth of teeth.
Lizzie recalls how she needed to wear braces as a child and how the treatment progressed with bone grafts to improve growth of teeth.
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OK.
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.
Natalie describes how her teenage son born with a cleft lip and palate may need further surgery to straighten his teeth despite wearing braces.
Natalie describes how her teenage son born with a cleft lip and palate may need further surgery to straighten his teeth despite wearing braces.
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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.
Ryerson explains that being born with a cleft palate can have a life-long impact on dental health and requires awareness from dental practitioners.
Ryerson explains that being born with a cleft palate can have a life-long impact on dental health and requires awareness from dental practitioners.
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OK.
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.
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