Social interaction and public awareness of cleft

A child or adult born with a cleft lip and/or palate may often be the subject of attention and may experience comments and sometimes negative attitudes from others. These comments may be a response to the way somebody with a cleft lip looks or a response to differences in speech and the hearing difficulties associated with having a cleft palate (see ‘Speech, language and hearing‘).

Parents were aware of comments about cleft lip and/or palate even before the baby was born or soon after the baby was born and when they went out in public for the first time. Most parents we spoke to found that the best way with dealing with comments is to be open and honest and explain what a cleft is and how it can be treated. Because most of the parents we spoke to had had little experience of cleft until their own child was born with the condition, this made them more understanding of the comments and behaviours of others (see ‘Telling other people‘). Some spoke about celebrities they were aware of who had been born with a cleft, such as the actor Joaquin Phoenix.

Tamsin and Andrew found the fact that other people, including children and older adults, asked about their son’s bilateral cleft a positive experience.

Age at interview 29

Gender Male

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Tamsin: With what’s happened to [son’s name], in a way weve had lots of attention from friends, family and community.

Sure OK yeah.

Andrew: And that again is an amazing positive that comes from all of the heartache that you get that you should really draw on that resource that people are wanting to be there helping and

Tamsin: Yes and people are very

Andrew: Very kind.

Tamsin: nervous. A lot of the time you get we get questions of, Has anyone reacted badly to seeing your child with this strange appearance?

Oh yeah, yeah.

Tamsin: And we can honestly say no, never actually. I mean going out to shops, and all these old dears come up to you and say, Oh your child smiled at me, and were like, No hes just smiling in general, so [laughs] it’s fine. Or they’ve come and asked about, Oh is that a cleft? I mean we never knew what a bilateral cleft lip looked like before, [son’s name]. We knew what a cleft was but not what it looked like.

Yeah.

Tamsin: Children often are the most honest people who will come up and point and ask you.

But you know that they mean no harm, so you just, and you just, it’s difficult to deal with but you deal with it.

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Rebecca and Russell feel that the lack of awareness displayed by members of public is based on fear of something they don’t fully understand.

Age at interview 23

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Rebecca: No I don’t think a lot of people understand it, which is why when, you know, people ask, were more than happily… happy to explain it.

Yeah.

Rebecca: Because we want people to understand because we know some people like if their child, child has a lip , you know, they’ll… the child gets looked at, and things like that. I mean we were sitting in the waiting room for [son’s name] appointment, and there was a seven week old baby there, and he had a cleft lip, and he was just the most beautiful little boy I’ve ever seen.

Yeah.

Rebecca: Honestly he was gorgeous. And… I think that the mother was apparently very upset and angry that this has happened, but the dad was more than happy, you know, just to sit and speak. And we were just, we were just chatting about our experiences, but I think what was coming across was that the child gets looked at a lot, and it’s just a case of people stare, they don’t ask, they don’t speak to them.

No, they’re too scared to say anything.

Rebecca: Yeah and I think that’s the problem: I think people are scared.

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Most of the new parents we spoke to had experienced negative comments from members of the public both before a cleft lip was closed or following surgery for lip closure. Most families believed that the negative comments were partly due to a lack of awareness of cleft-related issues, rather than targeted bullying.

All of the parents we spoke with believed that the closure of a cleft lip and other surgical interventions that can alter a child’s cosmetic appearance (see also ‘Cleft treatment pathway‘) should be pursued, because they felt society puts a high value on looks. They believed that such values could determine future interactions with others as well as the child’s development and opportunities throughout life.

Jenny’s daughter was born with a cleft palate and it was not until she was able to speak that it became apparent to others that she was different to other children.

Age at interview 36

Gender Female

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And what would you say the level of awareness was amongst your local community about cleft issues?

I’d say generally quite low. If I had £1 for every time someone said, Oh but you can’t see anything, looking at her lip, I’d probably have paid off the mortgage. That’s been a really common… comment that people make.

I mean it is, it’s an unusual thing, isn’t it? You know, I didn’t know anything about it. And I think in a way that makes it easier to understand other people not knowing anything about it.

Hmm yeah that’s true, yeah, yeah.

And obviously with kind of close friends, you know, they probably know as much about it now almost as I do. You know, weve sort of talked about it a lot as time has gone by. And, you know, I do get a bit annoyed sometimes at silly comments people make. Because now, for Maisie it’s, you know, her speech is kind of, you know, it’s obviously not what it should be. And as time has gone by shes kind of… it’s become, becomes more and more obvious as her peers’ speech has developed.

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Young children tend to be inquisitive: they may ask a child with a visible cleft why they look different and they might stare at a baby in a pram. Some parents said that they would prefer to be asked outright about the cleft rather than have their child stared at because they look or sound different.

Millie and Michael found that young children would stare at their son’s cleft lip and other mothers would make positive comments about other features rather than ask them about his lip.

Age at interview 20

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Millie: No. I’ve had a few when I’ve been out, and like I daren’t take him out, would I?

Michael: It’s not comments really.

Sorry, you wouldn’t take him out?

Millie: I was scared, yeah. And it was a woman who lives up the street, and she knows everybody, and there was a girl who lives near me, and her little girl had a cleft, and it just scared me, and you think, Oh God, theres people talking about it, theres people staring. And I was just really scared to take him out. And then when I finally took him, you didn’t, oh you took him out on your own, didn’t you, the first time?

Michael: Hmm.

Millie: And I was, when I went into town a few times with friends, I’ve had a few stares. And because I didn’t know how I would react to it, so I thought, I don’t really want to be the mum pushing a pram, punching someone for staring at my baby, or thinking weve had, there was one little boy, and he just kept asking and asking, but he was being, he was like, What’s wrong with his face? And I thought his mum should have just said, Go and ask. Because if people do ask me, I’ll tell them, it doesn’t bother me, I’d sooner educate people to it than them be ignorant and say, Well make fun of it.

Sure.

Millie: But it’s, that’s the best way to deal with things, isn’t it? But nobody’s, it’s like my friend, shes got a baby who’s a dwarf, and she gets really, really bad stares and things like that, doesn’t she?

Michael: Hmm, hmm.

Millie: But you’ve just got to, you’ve got to ask. I mean if somebody was… if [son’s name] did it I would go absolutely mad and I’d say to him, Just go and ask instead of shouting about it. But it’s not the right way for parents to be, when they can just sort of like try and shush the kids. Kids are inquisitive and they want to know if something’s different so I think they should, you know, be able to come up and ask about things. But we took him to the park, didn’t we? And there was two young girls there.

Michael: Well young mums.

Millie: Yeah, young mums, weren’t they?

Michael: Yeah.

Millie: And I’m sat on the swing and I got really nervous, because it’s the first time anybody, because they didn’t even notice it at first, did they? Because he was like two weeks old, he was tiny. And they were just cooing over this baby. But a lot of times we had like people looking at him, and they’d notice his cleft and they’d be like, Oh hasn’t he got nice skin? or, Hasn’t he got [laughs] nice eyes? and things like that, wasn’t it, instead of saying, Oh what’s wrong with his lip?

So they tried to think of something positive to say?

Millie: Yeah.

Michael: Yeah.

Millie: And I’d be the sort of one that would be like, Yeah hes got a cleft lip.

Michael: Yeah when you’re stood there and you’re thinking, I know you know you want to ask me something.

Millie: Yeah, but yeah the girls, they were really nice, weren’t they? And that gave me a real positive… way about it after that. Because there was… they didn’t see it as a bad thing, they were asking loads about it, weren’t they?

Michael: Yeah they were really interested about it.

Millie: In the end we were there for ages just telling them all about Xxxxxx cleft lip and things. And I thought… I’d sooner people be like that than people staring and gawping and pointing and things. Because I was expecting it to be really bad, wasn’t I?

Michael: Hmm.

Millie: And it wasn’t. A few negative things, weren’t there? But it was mostly kids.

Michael: You get the occasional stare.

Millie: kids and older people. Old people were terrible, weren’t they? Oh it’s good they can do something about it now, and you think.

Michael: Yeah, don’t worry about it they can sort it out.

Millie: [laughs] Isn’t it good what they can do nowadays? and things like that, we got that a lot.

Michael: I suppose back then they were just straight to the point really.

Millie: Yeah.

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Michelles son has not experienced any problems at pre-school and socialises well. However, Michelle had experienced comments from members of the public before her son had his lip closed.

Age at interview 33

Gender Female

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Yeah [laughs] yeah, loves socialising.

Is he at a preschool group?

Yeah hes at playgroup, yeah.

Yeah.

Hes been there for just over a year now. Yeah hes fine, he loves it. No, hes just… it’s not an issue for him. I don’t even think… well they say that children under 5 don’t notice things like that anyway, however, it’s never come up in conversation, I don’t even know if hes…

So other children haven’t noticed?

aware yeah. Well I don’t… as far as… adults notice obviously and… people comment on it, in the fact that it’s because they already knew and they say you couldn’t even tell now that hed had the cleft lip.

How do you feel when other people comment? Have you had any experiences of where you’ve been upset at all or?

[laughs] Before [son’s name] had his operation my friend had twins not long before I had him and so we were on maternity leave at the same time, so we used to go shopping and things, and get out and about and do stuff. And there was one day where we bumped into some workmates of hers.

Right.

And they were all cooing over the twins, as you do, [laughs] and then they kind of looked into my pram, saw [son’s name], and kind of went, Oh lovely, and then carried on with their conversation. And that hurt a little.

Hmm sure yeah.

But it’s understandable, because you’re not expecting it, to be fair, you know.

And this was before he had his op?

That was before he had his op. And there would be times where wed be in a shop and the lady on the till would be, Oh twins, lovely, and then kind of not make any comment whatsoever on my child.

But, you know, like I say, you can understand it. It’s not nice, but you can understand it, because people aren’t expecting it.

What would you say was the level of awareness then amongst the sort of environment that you live in?

Yeah well we were quite lucky because he was only three months old. The first three months we… spent a lot of time with friends and family, so they were all aware of the situation and, you know, and they were all

So it was quite protected, in a way?

Yeah, yeah definitely so it wasn’t really an issue, I mean apart from little things like that that, you know, would sting but… I couldn’t dwell on it really. Though having said that, after what happened later on, [laughs] maybe I did dwell on it, I just didn’t realise I was. But

That’s true.

Yeah [laughs] but, yeah, we had quite positive feedback. There were no friends that made any comments, or if they did they didn’t do it to our faces and we never heard about it. But I’d be surprised. And obviously our families loved him because, you know… hes still our baby, it doesn’t matter what he looks like.

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Mary Y did not experience any negative comments when her son was born but believes there is still a case for raising public awareness regarding cleft issues.

Age at interview 46

Gender Female

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I didn’t have. I think some, I know that some, some mums find difficulties to take babies to, to public, you know, to go for shopping. You know, you know, we were determined, you know… you know, we will, will be just like normal. You know, we took… I took everywhere. Because I had an older son, well he was only 3, so I said, Well I can’t, you know, not do stuff with my older son, hes only 3: I’m going to do exactly the same as I did, go to all this mother and toddler’s group with, with a baby. That was all pre-surgery, so there was a cleft there, and his cleft was quite wide, you know. So I went everywhere: I never had any unkind comments.

I even once I had when I was just walking with my pushchair, and there was one mum she said, Oh, oh you have a baby with a cleft. Could I have just a quick, quick peek, see how is he? Because my son was born with a cleft.

Oh OK.

So I thought, OK. So there wasn’t any I mean people will ask the question, you know, but it wasn’t in any… oh any rude or unkind comments; they were more like, you know… if I can… for me it was more like, you know, if I can educate them.

Yeah sure.

You know, it’s

So it was quite an open experience?

Yeah for me it was open. For some mums maybe it’s not some days. But that’s… I didn’t have, we didn’t have that problem. You know, as I said, we went out everywhere and we, and I think it’s just… if any problem I would have that will be if people will call it harelip.

Then I would just I would correct them. I would say it’s the term that we use now is cleft lip.

Yeah.

And that’s the only thing, you know, sometimes. But I think it’s less and less now people will use the harelip.

Yeah.

And I… I don’t like that comment. But I think… people need to be educated and I would, I would, you know, sort of just in a nice way I’d say, Well actually it’s a cleft. And why not hare, you know, you don’t call, you know, because, you know… it’s a wrong way to describe it. That’s the only thing, you know, if anybody would make any, any sort of comment that I had to sort of correct them.

OK.

I think it’s important, public awareness, yes what is I think is lacking, because I think it’s a lot of people are… very misinformed, and I think I think we need to raise more awareness, positive experience I think.

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Iva believes that there is a high level of awareness of cleft and physical appearance in today’s society due to the public profile of celebrities who were themselves born with a cleft.

Age at interview 29

Gender Female

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I have the feeling that he won’t have any problems. Because firstly we live in a society that the people are really open and they understand that everyone is different and everyone has their own issues. I mean it couldn’t, it could be, it couldn’t, it could be physical, it couldn’t be physical, but everyone is different, and everyone is like understandable about the others.

And hmm so I’m really not worry about anything. I even think that to have this small scar even it’s more beautiful than to be like perfect, you know, the perfection is not the most beautiful thing. I mean everyone is different.

Yeah.

Even I have a…

So would you say it kind of adds some character?

Yes oh definitely, definitely.

Yeah OK.

Because there are a lot of like famous people with clefts.

OK.

Hmm like, oh I don’t know what’s the naming, if I am saying it correctly in English, but Joaquin Phoenix, is an actor.

Oh yeah, yeah.

As well they are saying that Cameron Diaz was born with cleft.

Cameron Diaz, I don’t know if this is true or not. But so it’s just one of those things that are not, not, nothing.

Yeah, you just don’t notice?

Yeah, yeah, yeah, yeah, yeah so I don’t have any worries about him going to school and maybe if hes going to be asked by someone. Maybe not, maybe they will see something, maybe not, but I don’t think this is something that… that is… I don’t know.

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The individuals we spoke to who were now parents and were born with a cleft were aware of negative comments from members of the public at all stages of life. Most of the parents we spoke to had children who had experienced bullying, particularly at secondary school.

Natalies son’s engagement in sport has helped his confidence and the acceptance of his fellow school pupils.

Age at interview 49

Gender Female

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I’d like to think that hes… OK [laughs]. Hes a normal 13 year old, can be a right pain in the neck. I think hes adapted and accepted… what’s happened to him. I really, I would like to think he has. I think he is pretty balanced, pretty, you know, I… I suppose it’s like anything, you never know until much later on what impact it may have had on him.

I hope it’s been a positive one. Because he, you know, everyone will say to me, you know, when they meet him, hes always cheerful, hes quite a… I wouldn’t say hes massively confident, but hes fairly confident. Hes got lots of friends and hes just really normal, I think.

What sort of interests does he have?

Sporting, hes really, really into sport yeah. Hes very fortunate he, that we, well they, the kids go to a nice school that is able to offer them lots of sport, which he loves. And that gives him, I think, a bit of

Hes very engaged with that then?

Yeah that gives you, I mean especially as a boy, that gives you a bit of, you know, confidence that, you know, you’re in with the, in with the cool ones. Academically, hes not up there necessarily… hes, he struggles a little bit with his English. But he gets lots of help at school. And hes not going to be any great academic, and hes not desperately into his studying or, you know, hes not a boy that’ll sit down and read a book voluntarily.

So would you say

So sport’s his thing.

OK so the academic

So I’m not quite [laughs] sure where it’s going to lead him but

The academic side of things, do you think having a cleft has affected that at all, or is it, I mean is there any indication?

I don’t think so, I don’t think so. Other than perhaps… but I wouldn’t relate this to the cleft, he will say, because of his English is not great and he struggles with his spelling and hell go, Oh I’m stupid, I’m just stupid. You know, I say, No you’re not, you know, you’re just, you know, this is an area that you’re finding difficult but you’ll get through it. But I don’t think that’s related to the cleft, I don’t think so.

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Social interaction and relationships

The adults we spoke to who were born with a cleft lip and/or palate had a variety of experiences when interacting with others. They talked...