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Cleft Lip and Palate

Cleft treatment for adults

Adults born with a cleft lip and/or palate may require ongoing treatment despite having undergone surgery as children, teenagers and young adults. The healthcare of adults born with a cleft can sometimes be neglected because they are no longer monitored within the U.K. cleft service (Cleft treatment pathway) after the age of 21. 

The adults we spoke with appreciated the treatment they had received in their early and teenage years but were also aware that further treatment was available to them as young adults. Such treatment can serve a functional and/or cosmetic purpose e.g. orthognathic surgery (jaw alignment) and rhinoplasty (nose surgery). However, the people we spoke to who had been born with a cleft also experienced functional problems with teeth, breathing and speech.
 

Mally recently decided to have his cleft lip operated on again as his grandson was to be born with a cleft. He wanted to show his grandson’s parents (Millie and Michael) what could be done with cleft surgery these days.

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Age at interview: 62
Sex: Male
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When I reached adulthood and I grew a tache, you know, probably a bit sensitive to the... no, nobody gave me any you know.

And so you said you grew a moustache, so was that deliberate, to deliberately?

Yeah I grew the moustache really to hide the scar.

OK.

But... you know, literally two or three years ago I shaved my moustache off and decided to get it, you know, repaired, you know.

OK so you’ve had surgery in recent years?

Yeah I had me surgery, yeah, last year.

OK.

And I went to see [Doctor’s name] who does the surgery on the Indian children, you know, the Indian children who you see in the paper, who takes a team out to India and repairs them. So, you know, I went private and paid for it and it’s a result.

So was that something you’d thought about doing for a long time or what prompted you to do that?

No well I really, I did it for two reasons really: because the moustache was like a raggy hearth brush and also to prove to Millie and Michael, you know, knowing that they were going to have little [grandson’s name] their child, you know, their child, and just to prove that it could be put, you know, basically to perfection.

So how long ago was the operation then?

June last year.

OK so it was around the same time as the birth…

No just before, about... 

…of your grandson?

…about three or four months before [grandson’s name] was born.

So would you say that had been a prompt then?

It had been a prompt, yeah, it had been a prompt and to, you know, get it tidied up and... and yeah. And now the surgery is, you know, really good it’s... I think they made quite a decent job of it.

So do you think the techniques, the surgery techniques have improved?

Oh absolutely, because I mean there’s one thing that I can say to you, when I, when I got operated on last year, Mr [name] the surgeon, said what they didn’t do when they operated on me when I was born 50 years ago, sorry, 60 years ago, is they never joined the muscle together.

So I was like a lopsided lip.

OK.

And he said, you know, “I’ll re-join the muscle, re-join the lip properly and centralise it,” and... and, you know, this is the result. You know, from... you know, having a... quite a horrible scar on my lip, you know, to... you know, I think I’ve got a decent lip now hmm.
 

Karan’s dentist noticed that she was born with a cleft palate and suggested that she could get her jaw realigned through the NHS. Although Karan was keen to have the treatment, preparing for the surgery was an emotional experience.

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Age at interview: 47
Sex: Female
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Yeah so it was a complete shock... that... the NHS still had... a door open to me really.

Yeah.

And... 

Well good on the dentist too for recognising.

Absolutely yeah.

Yeah for flagging it up.

Yeah she phoned through and... you know, established that I still had entitlement to care.

And I was just stunned. I could have done it ten years earlier.

Yeah I appreciate that must have been completely like a bombshell.

Yeah, yeah I was just gutted, absolutely gutted.

Hmm OK, so what happened from then?

Well she referred to an orthodontist.

Because my feeling was I didn’t want to have surgery because when I had surgery when I was 20 it was quite... had quite an impact. I lost a lot of blood; I lost something like seven or eight pints of blood.

And I was in surgery for hours. Yeah, I was in surgery, I don’t know, something like six hours or something. So [clears throat] I was quite keen not to go through that again because it took me a long time to recover. I was very weak for a long time.

And it just, it just knocked me sideways, so I didn’t want to go through that again. So I thought, “Oh I’ll just have, you know, perhaps some braces for a, you know, couple of months [laughs]. And but my orthodontist obviously could see that there was room to work with and he could, he obviously knew what look... the team could get, I guess, and persuaded me to go ahead along the route of orthodontics followed by surgery followed by orthodontics.

And he said, “It’s, you know, it’s a long journey... and you’ve got to commit to the treatment.”

Yeah.

And I was, this is... two years ago now, and I thought, “Right, I’m settled, I’m not working all over the place, I’ve got the time, I’ve got the inclination and I’ve got the commitment to do it.”

OK.

So I thought, “If I don’t do this I will regret it so... go for it,” sort of thing.

So I jumped in with both feet and... went for it. So I got referred to [hospital name] to see if my palate could withstand the surgery that they would want to do.

What did that involve?

Well my initial consultation was a multidisciplinary consultation.

OK so was that with the whole team?

Oh yeah.

Hmm what was that like?

Hideous; I hated it.

Can you explain that a bit more?

...I understand why. And of course, you know, I can see how it works, and it works really well, but I just felt awful. I just didn’t enjoy it at all. I felt... very small and very... 

People sitting around talking about you?

Yeah, yeah and, yeah, I do understand why. I just thought it was in a horrible room.

It would have felt nicer in an office or in a lounge or in a conference room or, I don’t know, but not in this really daggy surgery room. And I just thought, “Oh my goodness.” I mean I ... coped with it, to a degree. I mean I was very emotional; the whole thing is very emotional for me, you know.

Did anyone go with you on that day?

Yeah I took my cousin. Yeah, I didn’t go on my own.

Yeah.

So yeah, but I did, I felt immensely intimidated by it and I didn’t like, I did not like being made to feel like that... I like…

Was it the fact that they were talking about you, the language they used or both or?

I just... what I don’t like about clinicians is... they... assume you’re ignorant, OK. They talk... I wish they’d tell me everything, you know. Or I wish they’d... I mean they were looking at my palate and I had this test, this machine, where I sat in this machine, and there was about eight of these people in this room, and students, and that’s fine, but I wish they’d said to me, “We’re just looking out to find out, you know, if your palate can’t cope with this then,” you know, I wish they’d explained more of what was going on and what could happen if this isn’t right, or what could happen if that is wrong. You know, I just wanted to know more about the whole thing, not... I mean nobody was wrong, but it could have been better, it could have been better. I just felt like... you’re talking about rearranging my face... you know, it’s not like, you know, reshaping a toe; it’s my face [laughs].

Right.

And I didn’t feel... I don’t know, I felt there could have been more said really.
Adults who were born with a cleft can access treatment within the NHS. However, for the adults we spoke to, experienced and sympathetic health professionals were needed to help provide access to relevant care such as orthodontic treatment. 
 

Mary W experienced breathing problems during routine visits to her dentist and she was then advised by her dentist that she could receive surgery on the bridge of her mouth and her nose.

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Age at interview: 53
Sex: Female
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Did you have any treatment as an adult at all?

Yeah I had some recently.

Oh have you? OK.

So I had I think it was about... two and a half years ago I was having some difficulties... with... going to the dentist because I couldn’t breathe properly, and so when they put the water in your mouth I always felt like I was drowning because I couldn’t breathe through my nose because what I found out was something had kind of collapsed on that side and it was preventing me from breathing. And I also found that my hole in my palate had never been repaired, so I got that [laughs] repaired two and a half years ago... and that was…

You thought it had been, but it hadn’t?

Yeah I thought, I assumed it had. They’d done something but they’d left... some holes there.

Right.

And I also had a muscle moved, which was in the wrong place they said. And there were various things going on that I didn’t realise.

So how long ago was this?

About two and a half years ago.

Two and a half or ten and a half?

Two and a half.

Two and a half, so pretty recently.

Yes.

OK and was that done in the NHS?

Yeah it was done at [Hospital name]... Yes and that was by chance I had been talking to my daughter’s dentist and he had suggested that I see someone there.

OK so it was a dentist with a fair bit of awareness about clefts?

Yeah it was at [Hospital name] yes.

OK yeah.

And I got referred and it was all... dealt with at the time. I had a problem with my bridge, which I’ve had since I was 18, and apparently it’s lasted really a long time because I’m now 53. And I had a problem with part of the bridge so they... I got referred to the [hospital name] two and a half years ago and they sorted that out for me, and then I had the operation on my nose as well all around the same time. And that was the only treatment I’ve had since I’ve been an adult.

So, as a teenager, how old were you when you last had treatment?

I think I was about 17/18.

OK so this was your first engagement…

Yeah.

…with services?

For me yes, yeah.

And how did that feel like going through that as an adult?

Well first of all I didn’t realise I could have any treatment, and no one had told me and I’d never ... since leaving the dental department at [hospital name] when I was about 18 I have never ever... spoken to anyone about any treatment I might need or…

Right.

You, you can’t... the ties were cut and I thought that was it. I thought that was the end of any treatment you could have. But... I was... there was a forum called ‘Face Forward’, which has now closed I believe.

And I found out that other adults were having treatment, so I realised that I could, and that was when I approached the dentist at [hospital name].

So you were quite proactive then?

Yeah, yeah definitely.

Once you had that signal from the dentist you kind of went out there and?

Yeah, once I realised I could and I didn’t have to suffer [laughs] which is because it was making me phobic of going to the dentist because I couldn’t breathe and I also felt that the dentist I had thought I was being a bit of a wuss and didn’t understand my condition properly to know that I really couldn’t breathe and was literally drowning during the treatment, you know, regular check-ups and ordinary stuff. 

Routine procedures, yeah.

Yeah, so once I found out, definitely I went down the path to get what I could... as an adult, yeah.

OK and perhaps you could tell me a little bit about how your life has been since that episode of treatment and what the outcome has been like in reality.

Yeah, yeah I mean I think the great thing is it was... completely discussed with me. And also the outcome that was, that was... to be achieved was realistic. And so I was told this might happen, this might happen, this might not happen, so I knew the pitfalls regarding infections and things like that, and I also knew that this is a possible outcome that may improve your breathing, which is the result, you know, the required result at the end of it. ...So it was interesting in terms of being part of the decision making process and knowing what was going to happen to me. 
 

Ryerson was able to access the treatment he needed on the NHS and found a lack of cleft awareness among GPs and general dentists. Ryerson eventually paid for private treatment.

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Age at interview: 41
Sex: Male
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So you’ve talked a little bit about the cleft treatment you had when you were much younger. I understand you moved to the UK as an adult?

Yeah.

I was just wondering what your experiences have been with some of the issues you’ve had as an adult who was born with a cleft?

Well the frustrations here are born out of... a couple of times now dealing with either GPs or dentists who have no idea what it means to deal with someone with a cleft palate.

Right.

And I find it incredibly frustrating to be fighting what they think is correct when I’ve been told, advised for years and years from specialists, on what is, you know, or what should be done and really having to stand up. So... stuff like... 

So have you gone through the National Health Service?

I did initially, and I left because I was so disappointed in the quality of the advice and the care.
Now maybe I was getting poor advice before, but I was always told that I had to be very, very careful about the loss of bone mass around the palate area and in the face. And the initial reaction with any dental problem here, especially when I was on the NHS, was, “Well we’ll just pull the teeth and we’ll look and see and possibly put in some replacements later.” And to get them to recognise what that means (a) for someone who... has always been... I was, I was always self-conscious about my looks, still am, and... to be told, “We’re going to take teeth out from the front of your mouth,” is... shocking and horrifying.

But compounded on top of that the lack of their engagement with what it would mean for a cleft line, the scar line on the…

Yeah, yeah.

… what that would do, I just, I finally had enough and... jumped over to private. And I am a pretty left wing guy, and that really, really drove me nuts to have to do it.

Yeah I’m sure, yeah.

Yeah it was a similar experience here actually, though it was overcome quite quickly, with the ENT clinic. Because I was having problems sleeping for a while, and starting to get sleep apnoea, simply because I wasn’t being able to breathe through my nose.

And getting them to think that this might not simply relate to having broken my nose, that I’d gone through surgery after surgery as a kid on it, took quite a while. And then for them to at least talk to me about what that may or may not mean once again for the for the palate, even if it means nothing, to at least have them state that it doesn’t, was... it took a while. Overall I’m quite happy with the with the ENT people, but it was clear they didn’t have that body of knowledge initially.

And they had to go look it up.

Yeah OK so do you think it’s something to do with lack of a continuity of care because you’d come over from Canada?

Well I’ve always dealt with that, because I was always always moving. The longest I lived in any building in my life until I married my wife was in the university residence.

OK.

So I was always transferring... well the GP, the orthodontist and the dentist every year, year or year and a half. But I found, generally speaking, that... they were at least aware of, or often aware of what... you know, what dealing with someone that has a cleft palate meant, in terms of at least talking to the patient, if nothing else, but also generally in terms of their about what is possible and what isn’t. And here I found that just that knowledge base didn’t seem to be there. Or maybe I just was not lucky with the particular people I’ve dealt with. But it just seemed that the base knowledge about cleft palates was missing.

OK thank you, thanks for explaining that. So what were the outcomes of the surgery you’ve had in this country, and what difference has that made to you, to your life?

Well for the ENT it’s made a huge difference. I don’t have sleep apnoea now. I can... I still snore a little bit, but I’m not going to wake up the neighbours or anything. So that’s made a huge, huge difference. As for the dentistry… it’s just what it is.
Younger adults can find that adapting to how they look following surgery may be difficult, particularly when they are at an age where they are self-conscious about their appearance but also trying to become more independent (see ‘View of self and appearance’). 

Last reviewed June 2017.
 

The availability of treatment for cleft can be overwhelming particularly for young adults. Hannah found it difficult to adjust following surgery and found the psychological support she received helpful.

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Age at interview: 22
Sex: Female
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I think there were times when... you know, like there were essential ones to have, you know, if it was a palate problem or, you know, a functioning problem then it needed to be done. And you know, I appreciate that more now than I did [laughs] at the time.

Yeah.

But there were times when... you know, there were options for cosmetic things to happen, so the rhinoplasty, the implants and all of that kind of thing. And... that actually... had quite a negative effect on me afterwards. So... I mean there was one, I think I was 19 or 18, and... I’d had rhinoplasty, implants and the scar taken all in one big operation. 

And I’d been warned that I... was going to look a bit different afterwards.

And I just, I couldn’t cope afterwards. I saw my face and I just thought, “This isn’t what I expected,” not that I really knew what to expect; it was just, you know, kind of... it’s an adjustment to your face that you now have to reintroduce yourself to every day.

And that was probably the lowest I’ve ever been; it was horrible.

How old were you then?

19.

OK hmm, hmm.

And I’d actually chosen to have that one.

Right.

It was very much I was unhappy and... 

So was it a case of making that adjustment or was it a bit more than?

Yeah I think... I think it was one of the things that just took a long time.
I think I mean when I first came home and saw my face I was like, “I just can’t look at myself.”

Right.

And ... it doesn’t help with all the swelling and the, you know, bruising and stuff. But even when it went down... I don’t know, I think every day I had to keep... looking in the mirror and getting used to my face again.

But, yeah, just as time, you know, went by I thought... “I’m the same inside: nothing’s changed there,” so... 

What kind of guidance did you get prior to that treatment, did you get any psychological guidance, support?

Yeah I mean there’s a really good... psychology department at the hospital I went to. And after that they were really supportive in... you know, helping me come to terms with, you know, my knew face and whatever.

And I’ve actually really benefited from... the psychology department. I think if I’d had them earlier I would have... done even better.
 

Lizzie discovered she could be more involved in making decisions about treatments as an adult. However, it was still emotionally challenging to receive appearance altering surgery as a young adult.

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Age at interview: 25
Sex: Female
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They always sort of said, “Right, this is what we want to do. This is how we’re going to do it. And these are the results that we were expecting.” So they’ve always been very, very good at setting out what they want to do and how it could help, you know, throughout your life, and also with... your appearance. So they’ve always been very, very, you know, throughout my treatment I can always say that I knew exactly what was going to happen. Possibly wasn’t prepared for some of the pain but, you know, they were, they, I always knew, you know, that my next operation was going to be this and that they were going to do this, that and the other. So I always knew what was going to happen.

Yeah hmm.

And there was one, it was... my... I think it was my first or second nose job, or rhinoplasty or whatever you want to call it, and they had a guest surgeon.

A guest?

A guest surgeon in, who suggested that they do something about my cleft lip scar to sort of, you know, just to improve the appearance of it.

So this was something a bit ad hoc, would you say, was it?

Yeah it was the day before I was supposed to have my surgery.

Oh right OK, not a lot of time to psychologically prepare for that.

Well I sort of said, “OK right, what, you know, what do you think you can do for my scar?” Because I hadn’t sort of seen it. And they said, “Well we think we can just make it a little bit less noticeable.” And I thought, “Hmm OK well... alright, whatever you think you can do to sort of, you know, make it less noticeable. Because that’s always been something... that, when I look in the mirror, I do see the scar, and if you can make it a little bit less noticeable then, then fine.” You know, and... I’m glad that I got it done. Because they did actually say, he did actually say that it wouldn’t be a sort of, you know, it wouldn’t be major surgery, it would just be something that they would do alongside the rhinoplasty. And I’m really glad I got it done.

OK.

Really glad I got it done, because that definitely made it... just... it’s probably not the best word to describe it, but tidier.

And when you get used to seeing yourself over the years, how do you adapt to the change, how is that adaption, is it an adaptive process or is it something which you can immediately accept?

It does take a bit of getting used to, especially if it’s major surgery like if you’ve had like, I mean I had surgery done on my jaw…

Right.

…whereby they surgically broke it, moved it forward and down. And that changed my appearance radically, in a good way, but that took a lot of getting used to.

You know, the fact that I had an over by, and the fact that, you know, all of a sudden my face didn’t, you know, my face was sort of more pronounced, it wasn’t sort of quite so... flat almost, that took a lot of getting used to. And... of course my nose operations, that took a lot of getting used to, because all of a sudden my nose didn’t dip down, it, you know, stuck out like it .. like everyone else’s did. That took a lot of getting used to.

Yeah.

But the one thing which... I really had a thing about was my gap in my gum where I didn’t have a tooth. I had my implant and a crown and they said, “OK well, you know, have a look at it.” So I smiled, I took one look at my smile, and I burst into tears because, you know, that was something that I’d always been very self-conscious about, the fact that I had a gap where a tooth should be.

OK.

I always wanted a full grin, and that took, that... probably affected me more than anything else, was that gap.

So it might not be the most obvious things which affect you the most?

Absolutely. I mean the big things do affect you but, you know, I was sort of... I knew that they were going to affect the way that I looked radically so, you know, it wasn’t a surprise when they did. But something so simple as just, you know, a false tooth, you know, all of a sudden I could grin and not sort of think, “Oh I’ve got a gap where a tooth should be.”
 

Elliott had surgery on his jaw when was 18 years of age and he felt comfortable with the making the decision as he been treated by the same team throughout his life.

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Age at interview: 20
Sex: Male
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OK so you said you had a jaw alignment.

Realigned yeah.

Yeah could you tell me a bit more about the experiences leading up to that?

...So before I had that operation I had to have... I had obviously the braces to get my teeth in the right place so they could do it. ...I also had, before that, a few years before I still had a small hole in the roof of my mouth.

So they closed that with some collagen and I had an operation for that. ...And I had my wisdom teeth out ready as well at the same time.

Right so it sounds like it was quite intense?

Yeah well I think that was when I was like 15-16. And then when I was 18 they realigned my jaw, so they... essentially I think broke it and just put it in a new place and... clamped it back together [laughs] I guess.

And what was the outcome of that then, that operation?

It basically meant that my... top jaw was more in line with my bottom jaw, because I think my top row of teeth were slightly further back.

Yeah.

...It also... they also put two little... pad things in my cheeks, which make your cheeks look more normal.

Oh OK.

It just sort of improves your bite, your grip in your teeth and the general appearance.

So it was partly functional and party a cosmetic thing, would you say?

Yes it was sort of half and half I guess then, yeah.

And was that something you were more or less expected to have done or did they ask if you wanted it done? What level of engagement did you have with?

I think it was when I was... 15 or 16 they asked if I wanted it done.

Yeah.

It was something I... sort of thought about for a while and then agreed to have done. It wasn’t something that they said, “This is, you have to have this done.”

OK so a bit of negotiation?

No they sort explained what they could do, what that would improve, what the risks were, sort of the positives and the negatives, and said, “It’s up to you.” And it was something I chose to have done... but... yeah.

How do you find that communication process with the health professionals and team?

I think I’ve seen the same sort of team for as long as I can remember.

OK.

I’ve always said... I thought they were very sort of friendly and... open. They don’t really... pressure you into doing this. They explain things quite well. So I’ve always been very happy with it all. Yeah they’re very... I’d say approachable as well.

Hmm OK yeah.

So I don’t feel like, oh I’ve got a question now, I won’t ask, ask the... I’d say you can always ask them questions, which I’ve found is very good, especially if you’ve got to choose some- something like that, if they can do this whole operation, but I think you’d be a bit silly not to ask them questions about it.
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