Ryerson – Cleft lip and palate

Ryerson was born with a unilateral cleft lip and palate. He is Canadian-born but currently lives in the UK, where he is a university lecturer in politics. Much of Ryerson’s cleft treatment was undertaken when he was a child in Canada, but he has had additional treatment as an adult in the UK.

Ryerson was born with a unilateral cleft lip and palate in Canada. He currently lives in the UK where he is a university lecturer in politics. Much of Ryerson’s cleft treatment was undertaken when he was a child in Canada, but he has had additional treatment as an adult in the UK. Ryerson attended military schools in Canada and was young for his year, and was aware of bullying from an early age. Ryerson took a pro-active approach to his bullying and took on the perceived bullies before they had a chance to get him.

At primary school in Canada, there was an assumption that having a cleft was in some way related to learning disabilities and was put in a slow learners class. However, eventually Ryerson took an IQ test and was put back into a regular class where he begun to thrive. Ryerson also received extensive speech therapy which he believes has been one of the most important aspects of his treatment in terms of his self-confidence.

Although self-conscious of his looks he was not deterred from dating in high school. Ryerson also achieved well at high school and went on to university. At university Ryerson began to feel much more comfortable with his appearance and became fully involved with university life.

Ryerson has had extensive surgery in his native Canada and some additional treatment in the UK as an adult. Ryerson found it difficult to access cleft related treatments as an adult in the UK. He had problems with sleep apnoea (snoring) and received consultations with ENT specialists who lacked specialist knowledge of cleft issues. Ryerson also had difficulty in getting good dental treatment for problems associated with his cleft. In his frustration Ryerson made a decision to have private consultations and treatment.

Ryerson believes that being born with a cleft has not held him back in life and together with the support of his family has made him a more outgoing person.

Age at interview 41

Gender Male

No I… I have never felt, though I said I’m self-conscious about the way I look, I have never, since I’ve come here, ever felt that anyones looked at me and said, Hey, you know, that guy, hes just a little bit too ugly for the post no, no not at all.

But has it affected your confidence?

Oh it affects my confidence in sort of funny areas but
It what kind of ways does it affect your confidence? Because obviously your career
Yeah, no, I… if any, in a way… hmm I think it’s probably contributed to me being more outgoing in some ways because I had to be.

So would you say there have been some positive aspects?

Oh yeah, yeah, yeah, yeah, yeah definitely, and much more than some of my friends, or some of my, some of the kids I knew growing up who also had a cleft palate. I was lucky that way.

OK so you knew other people with clefts?

Yeah, yeah.

Do you know how well they’ve fared?

I have no idea. I would imagine some of them are in prison.

Right OK hmm.

…Two of them were the big boys’ in various schools I was in.

Oh right.

Yeah just mean, mean… and, who knows, they may be judges and lawyers now. But, you know, that was a long time ago so… but how much of this I can place down to overcompensating, or compensating for having a cleft, and how much is a result of having fairly outgoing and loving parents, I don’t know. But I was certainly aware, I’ve always been very aware that I’ve had iteah.

Would it be fair to say it’s helped shape your character?

Oh yeah, it would be ludicrous to say anything else, yeah.

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Ryerson talks about dating and social relationships at school and his progression to University.

Age at interview 41

Gender Male

I’ve always been self-conscious of the way I look, always will be. But… after I started getting the nose repaired and rebuilt I guess some of my confidence came back. It… probably affected my ability to date for, you know, junior high school, but that… didn’t hold me back after that.

Hmm so what age was that then?

…Probably…

I’m a bit confused with high school in Canada, yeah.

Oh yeah, yeah, no worries. So we go, depending on the province, we go from Grade 1 through Grade 13.

Yeah.

I think everywhere has got rid of 13 now. So you would be in junior high from Grade 8-10 and high school from 11-13. So junior high school, when others were beginning to date, and that was before I had had some of the last… round of reconstruction surgery on my nose, I was not the most datable of the guys. I was outgoing more than most, so I could compensate for some of that, but

Outgoing in what way?

I’d go across the room and talk to somebody, which helps, makes a difference, yeah.

OK so you wouldn’t shy away then?

No, but it was always… I was always aware I had to as well though.

Sorry?

I was always aware I had to do that if I

OK yeah.

if I wanted to… you know, do what some of my other friends did easily, I had to push a little bit harder.

OK is that a common thread with other aspects of your life, would you say, or is that something peculiar to dating, more pertinent to dating?

Well the dating and the making friends and the fitting into new schools.

Yeah.

But that… a lot of that changed in the university, changed dramatically. It probably changed in the last year or two of high school really: kids begin to mature a bit and it’s… they’re more interested in who you are as an individual rather than the initial sort of physical, He looks a little different.

So a little bit less superficial or?

A little bit less, yeah, I think: I hope, I hope so, yeah hmm.

OK so things changed quite dramatically then at that, would you say?

Things really changed dramatically, I remember it changing when I moved jurisdiction right across the country when I was, what, 17, into a new school, 16 or 17. And… suddenly it was all fine….Got along good, I had a good circle of friends, yeah, it was not a problem, and then off to university and then, you know, university was…an eye opening experience, so yeah.

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Ryerson explains that being born with a cleft palate can have a life-long impact on dental health and requires awareness from dental practitioners.

Age at interview 41

Gender Male

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.

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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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.

Age at interview 41

Gender Male

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 well just pull the teeth and well 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, Were 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.

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