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Cleft Lip and Palate

Positive experiences of cleft and advice to others

From among all the interviews we conducted there were lots of stories of positive experiences. Families appreciated the support they had received from professionals, friends and others in their communities, schools and other services. There was a strong feeling of wanting to ‘give something back’ to the cleft community. This concept was formed on the basis of being grateful for the support of organisations such as Cleft Lip and Palate Association (CLAPA), CLAPA Edge and Changing Faces and for the treatment received through the regional cleft lip and palate services provided by the NHS (see ‘Cleft treatment pathway’). Some people were involved in giving advice to others through social media forums and others took part in fundraising and awareness raising activities for the cleft community in the U.K.
 

Natalie’s son was born with cleft lip and palate but through having good experiences at school and socially he has developed a strong identity.

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Age at interview: 49
Sex: Female
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I really, really don’t think it has, because he is quite a robust kid. And he’s been quite fortunate with the schools he’s gone to, I think, they’ve been supportive and he’s not had to change schools very often. Well he was at primary junior school and then we changed him to senior school but…

Is he aware of any other children with a cleft at all?

Interestingly there’s a lad that’s just come to his school that has got a cleft, that we’ve met before.

Yeah OK.

But apart from that, no. And he’s a bit resistant now to come to any of the events that I get involved with. He just, it’s not cool anymore. But I wouldn’t push him.

You’d say he’s fine with his own identity then?

Yeah, oh yeah, yeah, yeah, yeah and…

Not, not needing to…

No not need, well, you know, I think…

Not needing to be part of…

No, any kind of…

…of a, yeah, of a group?

Yeah but I think he, I think he knows, hopefully, through what I do and get involved with, that, you know, he’s not on his own.

Yeah.

He’s not some kind of, well I don’t want to use the word “freak” because that’s awful, but he’s not that kind of, he isn’t on his own with what he’s got as a condition and what he’s been through and what he might have to... he knows that, I think, because of what I talk about and what I do with the, with CLAPA and the branch. And, you know, we have Christmas parties, we have summer parties, he doesn’t want to come to them anymore, and that’s fine, I’m not going to push him. But he knows that... there are loads of other kids out there like him. I’d like to think he does, hope I’m not putting [laughs] words into his mouth, or thinking things that he’s not thinking. But, you know, you kind of sometimes do that as a parent. But I’ve tried really hard to... to make him… feel... like it’s just something he can talk about, or hopefully accepts what it is, and that it’s no big thing really, you know. And so yeah, no, thankfully, God, he hasn’t had, I really hope he doesn’t at any point, he hasn’t had any bullying.
 

Matt’s daughter was born with a cleft palate and being able to share experiences with other people through direct contact and social media made things easier for the family.

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Sex: Male
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Well the only other one was , yeah, was just was CLAPA, but also just, yeah, groups on Facebook really and just getting in contact with, with parents. I mean my wife’s been more into that than myself.

OK.

Just yeah going on Facebook and sort of hooking up with other mums and... things like that. But that’s been pretty much her... her domain really.

Yeah so was this kind of a positive aspect of what you’ve been going through?

Yeah I think so. I mean and, and also hearing, obviously, my wife, we chat and stuff, and she relays what she’s learnt from other people, what they’re going through and stuff. And so it’s just, yeah, I would say it’s very positive. I mean I think that’s a big thing, I mean in society, where we should, when sort of people are going through things, actually you share with one another what’s going on, and encourage one another and say, “Look, hey you’re not in it by yourself, we’re going, we’re going through it as well.” And, and because you do think you’re very, oh you’re thinking, “Oh no, it’s only us, why has it happened to us?” all this kind of stuff. And you always have these questions.

Sure.

And it’s when you can say, “Look, it’s not just us, it’s, we, there’s another family there, there’s another family there,” and, and then you can chat to them and encourage them. And, as I say, my wife still contacts this little family who’ve had a little boy who had the cleft palate.

Yeah.

And it actually perhaps sparks up friendships as well which you wouldn’t necessarily have had. And just, yeah, just encouraging one another really, but yeah.

OK great. So is there any advice you would give to other families or health professionals at all, in the way people communicate about cleft lip and palate?

I would say... just, yeah, just be honest and about how you’re feeling. Because I think it’s the worst thing to kind of shut up your feelings and sort of think, “Oh it’s, it’s,” you know, saying it’s all OK and you’re fine with it. And ask questions as well when you’re seeing particular specialists and the cleft nurse team.
 

Andy and Diane encourage parents to look at UK based information from reliable sources such as CLAPA. They also question the information given through the NHS and how it is delivered.

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Age at interview: 36
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Diane: I just think the best advice is to stick to, if you’re going to do research, I think stick to... the proper... 

Andy: Official sites.

Diane: Official websites, like the CLAPA website or the hospital has got their dedicated website. Or to speak to a cleft team and see if they can put you in contact with a family who has gone through it, because I think that’s the best 

Andy: I certainly think so, yeah.

Diane: The best route to go down: somebody who has been through it, or to read stories on the CLAPA website of people that, you know, their stories. Rather than just go ploughing on Google and finding, oh, all sorts of negative, I think.

Andy: I think that’s what it boils down to, because there was a lot of stuff from like America with the stories and things like that…

Diane: Which are very different.

Andy: And it’s different levels of care and different systems. And you can’t kind of…

Diane: Yeah, just to be careful I think.

Andy: You know, you can’t compare that, you know, because they haven’t got an NHS over there. And like I said, there’s different levels all over the place; it’s kind of, yeah. I certainly think that, from my perspective is... to deal with this kind of message as well then, you know, some NHS departments maybe need to re-look at how they deliver the messages and what support is available when they do deliver them at the time, you know, and that help and support. Because, certainly from our perspective, and I think from somebody else as well that we know as well, it was pretty much... delivered.

Diane: Quite abrupt yeah.

Andy: That kind of way as well. So I think, you know, I think they need to be aware about what can happen and how you can deal with it.
Parents and individuals also had advice to give to others regarding how to research cleft-related issues with regard to treatment and living with the condition. 
 

Becky and Mark say that looking for information on the internet can be misleading and advise looking at recognised sites such as CLAPA. They also advise to look at ‘before and after’ images of babies that have had cleft surgery.

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Mark: Well my biggest advice would be don’t go on the internet like Beck did, which I know for some situations you could find it reassuring, but it did throw up a lot of other things. The CLAPA website was great for the photos, because it is nice to see before and after, because you want to know what you’ve got to go through.

Becky: Yeah, yeah.

Mark: You know, and it’s it was nice there. But obviously just go into sites which are recommended, not sites which are just made up by people, because they can be quite negative.

Becky: Yeah, yeah. And my advice would be just to go with your emotions, if you’re feeling, you know, to go through like, you know, you probably when, if you have a diagnosis, is to go with those feelings. You know, sometimes you know, that shock, that loss, just to let it, you know, just to, to come over you and just and deal with that. And even if you’re having, you know, really negative thoughts, I think you’ve got to go there sometimes.

Mark: Yeah you have to.

Becky: You know, if you’re feeling angry, to go there. Because I think, you know, it’ll come out in other ways otherwise. But just to recognise, “Yeah, I’m feeling like this,” but at the end of the day, you know, from, you know, it’s not a major thing, it can be sorted. And, you know, to write things down if you’re not sure about anything. But it’s not, it’s really not such a big deal. You know, from the initial diagnosis you think, “Oh my goodness,” you want your child to be... sort of normal or perfect, but what is, but it’s stuff that can be dealt with. And it’s, I think from…

Mark: Yeah it can all be overcome.

Becky: It can be, it can all be, you know, overcome really.

Mark: But like ask these health professionals, because they are there for support. And don’t be afraid, however stupid the question is.

Becky: Any stupid question, some of the questions I’ve asked.

Mark: Write it down, you know.

Becky: Was just thinking, but I thought, no, if that’s…

Mark: But he didn’t think they were silly, were they?

Becky: Definitely not.

Mark: He was, you know, very good, you know.

Becky: Yeah.

Mark: “Please just ask.”

Becky: Yeah.

Mark: And keep annoying them. Because we do, we ring up with any question at all, don’t we?

Becky: Yeah and sometimes sort of, you know, I know with the CLAPA website they’ve got things like parent contacts information if you... I didn’t personally use that but, you know, for some people that might be useful. But, you know, sort of or even speaking to people, you know, like the local team can put you in contact with people.

And you know, the nurse, seeing photographs before and after, or speaking to families like say with the feeding concerns, different things like that, you know, probably families who have experienced it, they’ve been there, and they probably have come up with a, you know, a solution and you know, it’s to gather that information sometimes, isn’t it?

Mark: Yeah definitely.

Great OK. And, sorry, just to go back to the written side of information.

Becky: Yeah.

What kind of written information would you like to see at that point of diagnosis?

Becky: I just, I think it was just like perhaps a simple leaflet would have been helpful. Because like once we first had the diagnosis, it’s like sort of because I think sometimes at that particular stage, all according, you could be perhaps a bit too overwhelmed with too much information. But just something simple about like, you know, should you need to contact somebody, like perhaps a website with some, you know, information on which is like recommended, somebody to contact. Or like sort of some of the most common questions, just like sort of on the leaflet, which is something quite basic. You know, you’ve had a diagnosis, what is it you know, what can be done about it? And just basic stuff at that stage I think would be useful.

Mark: But also I think visual pictures as well.

Becky: Yeah, yeah I think

Mark: Because the pictures were the best thing, because the hours we spent looking at before and after photos…

Becky: Yeah I, when we had…

Mark: …trying to make comparisons to what we were having.
 

Mary W encourages others to consult charities such as CLAPA and Changing Faces and not to let a cleft become a defining feature of your life.

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Age at interview: 53
Sex: Female
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So I think that’s really important. And as a parent... I would say... to find out as much as you can from the professionals, not necessarily from all the people on the internet, so like CLAPA, contact an organisation where they know what they’re talking about, or Changing Faces, they’re really good as well. And don’t be afraid to let your child... do what they want to do.

Don’t let it hold them back. It doesn’t... after the treatment is over and done with it doesn’t stop you living your life. You get a job, you have a relationship, you have children... and, you know, I don’t think it’s made that much difference to me. 

Yeah so I suppose the point you’re making is that it’s not a defining feature like of an individual?

No, it’s part of you but it isn’t you.

Yeah.

You are everything else plus that. ...And... it’s not going to hold you back. As long as you’re realistic and not going to go off and try to get a job as a beauty queen: but I might not have tried to do that without a cleft.

Yeah.

...So... you know, you can do anything you want to do: just do it. And your children can do anything they want to do: just encourage them to do it. And hold your head up high: that’s the most important thing. Because you can spend a lot of time hiding yourself away. Eventually people stop caring anyway and stop looking. ...Just, just go out there and enjoy life.
Some of the younger adults we spoke with had received good information and support from other people born with clefts they had met through ‘CLAPA Edge’. CLAPA Edge is the Cleft Lip and Palate Association’s organisation for young people who were born with cleft lip and/or palate and incorporates a youth council for the discussion of cleft care. The ‘Adult Voices ‘ network provides a forum for adults born with cleft to discuss issues of living with the condition and accessing treatment as an adult. Adult Voices is associated with the CLAPA Facebook pages. 
 

Alex was born with a cleft lip and palate and experienced bullying when she was younger. Her experience has been more positive as an adult and has volunteered to work with the CLAPA Youth Council (CLAPA Edge).

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Age at interview: 19
Sex: Female
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Maybe you could summarise your experience of being born with a cleft lip and palate?

Yeah... so the first experiences I remember of it are being bullied because of it. But then I moved schools and... had more operations and so it started to improve. And then I started... to not really care about it anymore. And then through more treatment... I’m at where I am today, and it’s a positive experience now.

And what advice would you have for other young people who are born with a cleft lip or palate?

To not like let people get to them, to like not listen to the bullying and try and get it sorted as soon as possible. And then just be positive, because it makes them unique, and so it’s a good thing, not something to be ashamed about, so yeah.

OK thanks. And you mentioned earlier that you’ve been involved with CLAPA again recently, can you perhaps explain what’s brought you back into that, into that world, and what you’ve given to the organisation?

Yes well it’s just like we were waiting for a normal orthodontic appointment, and I saw a flier for the CLAPA football weekend, and then I went on that, and then I found out more information about the youth council, and then I went on that. And then I became too old for the youth council, so I am now a volunteer for CLAPA, so I helped out on residential weekends or part of the like... sorting out money, so wherever they need help really.

So some of it is practical help and some of it is more, would you say more emotional?

Yeah.

You know, do you have contact with other people with clefts and?

Yeah like there’s loads of like different meetings, and you meet new people, and you hear their experiences, so it can help some people, 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.

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Age at interview: 19
Sex: Female
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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.
 
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Jon was involved in starting up the Adult Voices network for adults born with clefts.

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Age at interview: 38
Sex: Male
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I sort of thought it would be quite nice to... sort of help out [laughs] I guess. It was really nothing to do with my... you know, it was just something I thought that would be a nice thing to do. They were ... at the time in a magazine or somewhere had a wee article, ad saying, you know, they were setting up Adult Voices, which was... a group of adults with clefts.

So this is at the set up of Adult Voices?

Yeah I kind of represent adults with clefts to CLAPA, and I think that had previously come out of perhaps a conference where it had been acknowledged that a lot of CLAPA services were directed towards children and parents. And actually children stopped being children at 18 and are adults for three times as long, that there was kind of quite a sizeable demographic of people who weren’t being represented by CLAPA. If you do the maths, if one in 500 people are born with cleft, that’s something like 100,000 people in the UK, quite a lot of people.

It’s a sizeable population isn’t it, yeah?

So... they invited a bunch of people to come along and just have a kind of brainstorm and I went along to that. And... a bunch of us agreed that we would move forward and set up Adult Voices because I’m... quite, well because I’m vaguely organised and I sort of during that initial session kind of pulled together the kind of... the chat and just some kind of structure.

OK.

I guess I got... when someone said, “Who wants to be chair of it?” everyone pointed at me [laughs].

OK are you the first selected chair then?

Yeah so I’ve been doing that ever since. I’m planning to hand over to someone else at the end of this year. I’ve done a few voluntary/charity stuff things, mostly not cleft related, over the last ten years, and I’ve chaired a couple of things, a couple of boards of trustees for charities and things. And I’ve always taken the view that three years is quite a good period to do something: it’s long enough to make a difference but not so long that you get bored and fed up [laughs].

Are you looking forward to handing the role over or?

Yeah.

Yeah.

Yeah and I’m kind of... what I’d like to do is just kind of get more involved with adult... contact, which is something that I’ve put a funding application in to CLAPA for, which is to set up a kind of regional network of people who are... who other adults with clefts who want to talk to someone with a cleft can contact.

Oh I see, yeah, so like a buddy system?

Exactly.

Yeah oh that sounds…

Which is something that struck me as necessary. And we started, we started the Adult Voices, not, perhaps not really knowing what... we were there to do [laughs].

Yeah sure, yeah.

And at the time kind of realised that there were particular things that are quite useful and particular things that we thought might be useful that really aren’t. And... having set up really simple things like a Facebook site for adults with clefts, which has now got hundreds and hundreds of members, it became quite apparent that people with clefts, not everybody but some people should get support from other people with clefts. But some people I’ve had direct contact from others. But it kind of came to my attention that anyone who is being named as a potential contact needs a bit of training around what is appropriate, I think particularly down the more emotional, psychological support, which is what, I think, what we acknowledged that a lot of adults perhaps need, adults with clefts, or if not a lot then some. People who have contacted me, some, some contact has been very practical around how to access treatment or…

Yeah sure.

Quite a lot of it, in a way, has been people kind of perhaps with more emotional needs, people at low points where the cleft is perhaps a catalyst for that. And also, as a layperson, albeit a person with a cleft, I think it’s important to have a kind of common agreement across the adult contacts as to how to deal with that, how involved to get, how involved not to get, when to refer people on, that sort of thing.
 

Elliott was bullied when he was younger and regrets that he let it happen to him. His advice is to surround yourself with positive people.

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Age at interview: 20
Sex: Male
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I’d say my main bit of advice, if I was going to give anyone advice, is try not to... let what other people say get to you.

Just... I’d almost say surround yourself with positive people and if anyone sort of is negative or says things or... affects you in any way, just... don’t let them bother you; ignore them.

I think just because you’ve got a cleft lip and palate, it doesn’t make you different or it shouldn’t; you’re the same as everyone else, it shouldn’t matter at all. I think it’s one of the most... regrettable things I did was letting someone make me think that because I looked different I should be treated different and... should allow myself to be bullied. And... now I think about it, I think it’s quite a... silly thing to let myself think.

It’s easy to say that in hindsight, yeah.

Yeah I mean people said it to me at the time but sort of... you don’t know. But... now, now I think about it, it is really true. 
Last reviewed June 2017.
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