Iona

Age at interview: 19

Brief Outline:

Iona is a trainee nurse and was born with a cleft palate and lip pits. She had her palate repaired as an infant and her lip pits were corrected as a teenager. She has also recently had orthognathic surgery to improve her jaw alignment.

Background:

Iona is single, and is currently studying Nursing at university. Iona is White British.

More about me...

Iona was born with a cleft palate and lip pits. Iona attended a mixed school in Scotland where she experienced bullying because of having lip pits and because of her impaired speech due to a cleft palate. However, Iona believes that this experience has made her more determined to achieve and has helped to shape the person she is today. Consequently, Iona has achieved well academically and was offered a place at university where she is studying nursing. 

Iona’s mother was also born with a cleft palate and consequently she had a good understanding of what Iona might have to face throughout her life and together her parents have been a good source of support for Iona. Iona had her palate repaired as an infant and her lip pits were corrected as a teenager. She has also recently undergone orthognathic surgery to improve her jaw alignment. Iona was well prepared for the surgery and felt comfortable in asking questions of the surgical and cleft specialist team. 

At the time of interview Iona was making a good recovery from the surgery and the procedure has improved her bite. The surgery has also changed the shape of her face, giving it more fullness. Another aspect of the surgery is that it has changed the sound of Iona’s voice – it has become less nasal, but also less powerful. However, Iona’s speech is something that can be addressed through speech and language therapy in the future. Iona is looking forward to a career in paediatric nursing and enjoys rock climbing in her spare time.

Iona speaks about her recent orthognathic surgery conducted on her jaw.

I understand you’ve recently had some jaw orthognathic surgery, is that right?

Yeah I had upper jaw surgery about five weeks ago.

Could you explain the purpose of that, of the surgery?

Yeah previously my top jaw was set behind my bottom jaw and... I think that’s just what happens if you have a cleft. And kind of through brace work, it took a couple of years, and then just five weeks ago I had my top jaw moved forward just so it settled in well like... normally, as you would say, which means obviously my bite is now normal, so my jaw is in front, my top jaw is now in front of my bottom jaw. And also it’s given me quite a lot of more fullness in my face.

More fullness?

Yeah because before it was quite sunken really.

OK.

But it’s kind of... given it a lot more fullness, which is good.

Yeah thank you. So could you tell me how you were prepared for that operation, what kind of support were you given?

Yeah well it was kind of, it, it was something that had... that I... hmm it was something that had been on the cards for like years and I knew about it.

On the cards?

Yeah so I had known about it for quite a long time. But because it’s the kind... because it’s an operation where you need to wait until you’ve stopped growing I can... it was quite a long wait from finding out about it to then actually having it. So... obviously your cleft team explain it all to you and it’s obviously your choice, it’s not a necessary operation but like obviously beneficial. So it was just brace work for quite a long time and then ... kind of meeting with the team and it was any questions I had they were more than happy to answer them, and I felt like really comfortable to go to them with cleft issues that I had, even if it was something really small and might be insignificant, but it’s not... like they were more than happy to answer it. So... the support network before it was... preparation for it was really good.

Really good?

Yeah.

So you were pleased?

Yeah.

And did you feel able to ask, did you feel confident in asking questions?

Yeah I felt like I felt really confident in asking whether it was the surgeon or an orthodontist anything you like: they were happy to answer it for me.

Iona engaged in speech and language therapy as a child and has assessments throughout her life. It is likely that she will re-engage with speech therapy following jaw surgery.

And what kind of help have you had with your speech over the years?

I have had... when I was younger speech and language therapy quite a lot actually. Kind of as I got older I have, I have speech assessments every now and again. But in terms of... treatment-wise they’re not always keen, it wasn’t seen, they weren’t keen to do speech and language therapy and speech assessment. But it’s something that I’ll be looking into again in the next year or so; I’ll probably readdress the issue yeah.

Yeah, yeah I had been told that by moving the top jaw forward it would give more of a better proportion of my jaws in terms of facial appearance. So facial appearance would become more proportionate and just the fullness in my... my face would improve, like improve. I was told that speech could be... speech could go either way: it could be improved or it could have a negative effect.

Really hmm?

I’ve had a bit of both [laughs]. I’m a lot less nasally than I was previously.

Yeah.

But the strength to my voice.

Less nasally now but?

Yeah uhuh but the strength of my voice, sometimes I struggle to kind of pronounce like certain sounds. But again that’ll just... that’s something else later down the line that can be fixed.

OK so that’s a longer term…

Yeah.

…outcome?

Yeah.

Once you, because you said you’re going to re-engage with speech therapy?

Yeah, yeah and so it’ll maybe be another... so speech and language therapy, perhaps another operation later down the line, I’m not sure, but it can be addressed, so that’s fine.

So you’re confident?

Yeah, yeah I’m not too worried about it.

Sorry?

I’m not worrying about it, so its fine.

Iona believes that having a cleft may make her different from others although it does not define her as a person. To be able to accept having a cleft it is important to have good support and be prepared to talk to others.

It does take time to develop ways to deal with it. At first it’s very hard and you just want to run away from it all but that’s not the answer. Ye ken I personally found people that I could talk to, whether it be people at school or family and... you just kind of... you kind of... you learn to accept that you’re born with a cleft, and that’s not going to change. And over time you learn to think, “That is what makes me different and that’s actually a good thing.” But until you reach that point, you need to find a good like support network to kind of talk over what you’re thinking because if you don’t voice what you’re thinking, nothing’s going to get done.

Right.

So... like I feel it’s quite important to talk about it.

Have there been any particular difficulties you’ve had at all?

... In terms of social?

Yeah or any particularly positive things, rather than focus on negative.

Yeah positive things just... having a good support network and helping the... helping you to come to terms with, as I said, helping you to come to terms with the fact that having a cleft is a good thing. It’s not... everyone’s going to have something that makes them... different, and you don’t want to be like everybody else, and having a cleft gives you a story, it makes you who you... it makes you who you are... and it shouldn’t be seen as... a negative. People might treat you like it’s a negative, and they might say things, but... you know, I’m sure they’re not perfect, and their imperfection might not be noticeable as having a cleft is, so yeah.

After leaving school Iona went to work in a restaurant before going to University. The experience of working with other people and public helped to boost her confidence.

So you left school when you were 18 or?

I was 17. 

So did you go straight on to university after doing A Levels.

No I took a year out.

Sorry?

I took a year out.

OK what did you do in your year out?

I just worked in a restaurant for a year which was…

So did you work in the caring field or something different?

No, no I... it was kind of a last minute decision to take a year out, and it was just kind of just a regular job in a restaurant, nothing…

OK a restaurant yeah.

Yeah but…

And was that a situation which boosted your confidence?

Yeah, yeah.

Because obviously in a restaurant you’re meeting a lot of people and…

Yeah, no, definitely, it was definitely beneficial and…

Would you say it was a confidence boost?

Yeah it was in terms of kind of coming out your shell a wee bit more, kind of going from school where everything about school was... remember about being bullied, and not being happy as I was meant to be, and to then kind of going somewhere new and meeting new people, and nobody knows anything about that, and you don’t really have any memories of, like any bad memories, no. It was it was good to go somewhere where people didn’t point and ask questions.

So was that in town or?

Yeah, yeah.

So you did that for a year and then…

Yeah.

…and then applied for university?

No, no I already had a place.

Oh you already had a place, yeah?

Yeah so then just left the job to go to university.

So how would you compare university life with school life?

Oh completely the opposite end, like chalk and cheese, like two different. Obviously with the... the degree I’m in people like... people are more able to understand and people will be different. And, no, there was... I mean there’d be a few incidences of just people being just life, people being, you know, kind of comment on the way you look, or comment on the way you speak. But, yeah, you just brush it off.

That’s nice. OK so you’ve done your first year at university.

Yeah.

So how does that feel to have that, to sort of be on that trajectory now?

Yeah it’s certainly a sense of achievement and... it’s good to... kind of... yeah it’s a sense of achievement ...to know that you wanted to go somewhere and you were like... and you achieved it when people didn’t think you would. 

When you say ‘people didn’t think you would’ who do you refer to?

Oh just like from school, you know.

Is it peers or teachers?

Peers.

Or both?

Oh both I suppose. I suppose when... kind of from school where people just kind of thought that she was bullied you know, “She’s in her shell, she’s got no self-esteem, no confidence; she’ll not get anywhere.” And then kind of working your way up and proving the people wrong, so yeah.

Iona’s school experience had tainted her self-confidence but it did not stop her from pursuing her chosen career in nursing.

So what sort of school did you go to for secondary?

A regular High School.

Yeah was it a mixed school?

Yeah mixed school, yeah. It wasn’t... the nicest area [laughs] so there was quite a lot of incidents, and I think that probably contributed to the fact that bullying was quite an issue.

Bullying?

Yeah just but yes that was my... school.

OK what kind of impact did that have on you in terms of your esteem and your achievements educationally?

Yeah it puts your self-esteem to rock bottom [laughs]. But I had always... I kind of always had an idea of what I wanted to do and…

You’ve always had a good idea?

kind of where I wanted to go, like nursing was always something I wanted to [pursue]. And at times... the school’s not easy, you don’t want to go and you don’t... it kind of makes you feel... it makes you feel rubbish. But then it kind of gives you a bit of a boost to... like, “I’m going to prove these people wrong. I’m going to like do well,” and just kind of kept my head down and, yeah, got to where I wanted to be so…

So what inspired you to go into nursing?

Probably family thinking your family does it influences you. So but also just from my previous experience of you know, having a cleft, that’s kind of made me want to... it kind of inspired me as well. From any time I’ve been in hospital like the nurses have always been absolutely excellent and... that kind of made me kind of... take the path to…

Was it feeling kind of you wanted to give something back?

Yeah like kind of thinking of I want to be, as a patient in hospital, I want them to look up to me like I looked up to the nurses, and helping people in... 

OK to be inspiring…

Yeah.

…and respected?

Yeah you’re kind of helping people, like... being someone, being a person that someone in hospital can go, like you feel comfortable with, and making that experience, although it’s not a good experience to be in, making it as good as it... like making the experience of being in hospital as good an experience as it’s going to be, yeah.

Iona suggests that there could be an online service which enable people born with clefts to communicate with others who have had similar treatment to themselves.

A lot of people don’t know a lot of people with clefts.

OK yeah.

In terms of you might have a good support network from your friends and your family but... if they don’t... completely understand it’s quite good to be able to talk to somebody else. And I think... being able to... to get in touch with other people with cleft, whether it be over email or if you’re close enough to like meet up, that’s definitely important.

So like a buddy scheme or something?

Yeah like and it’s just, especially when you’re younger and, you know, things like treatments have been mentioned, obviously to like cleft teams and... other professionals involved in your treatment that is every day to them; that is what they do. They deal with, they deal with so many patients and their treatments will be similar so... but to you, that treatment, you’ve, you’ve never had it before, you don’t know what to expect, so it can be quite daunting for somebody.

Yeah.

And not knowing what to expect or and it’s kind of hard to remember that people, you know, it’s their job to talk about it, that you kind of need to be able to talk to somebody as well. ...Like it would have been good with someone who had been through it, and you’re able to get in touch with them and like ask any questions.

Sure.

And they can answer you from someone who has been through it, rather than just a professional saying, you know, what their thoughts are. Someone who has actually been through it, it kind of gives you a bit of a... makes you feel a wee bit more comfortable about it.

OK thanks. So where have you gone for information yourself over the years? Do you use the internet for information?

Yeah I 

And what do you think of the quality of the information?

Yeah I think it’s... there could possibly be more patient opinions out there, more views from people with cleft, even if it’s just people asking, not so much even if it’s just the information up there from patients, people able to ask questions. It would be quite good if there was something more accessible online in terms of asking questions, and someone who had had the same treatment or, yeah, the same treatment be able to get back to you and answer your questions. Rather than it just being ...because a lot of the information that’s out there is just what a cleft is, these are the potential surgeries that people will need to go through, but there’s not actually a lot of ‘this is what it’s actually like to have this treatment’ or... which I think would be quite beneficial to a lot of people. It would probably put a lot of people at ease a wee bit more.

Yeah I understand, yeah.

Yeah but I know there’s like ... there is a lot of information out there, and there are quite a lot of social interactions out there as well, but it would be quite good if it could just be widened a wee bit.

Widened yeah?

Yeah.

OK and is there a group, a CLAPA group for young people or?

I know there’s a CLAPA website aimed at the younger people, CLAPA Edge, I think.

CLAPA Edge?

Yeah.