Social interaction and public awareness of cleft
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).
- Age at interview:
- Tamsin is White British and full-time mother of a son born with bi-lateral cleft lip and palate and a suspected genetic syndrome. Tamsin is married to Andrew who is also White British and works as a project manager of an electrical contractors company.
Tamsin: With what’s happened to [son’s name], in a way we’ve 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 we’re like, “No he’s 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.
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.
- Age at interview:
- Rebecca and Russell are both White Caucasian, are married and work for their local authority. They have one daughter of 16 months who was born with a cleft palate.
Rebecca: No I don’t think a lot of people understand it, which is why when, you know, people ask, we’re more than happily... happy to explain it.
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.
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.
- Age at interview:
- Jenny is a clinical psychologist and is married with a son aged 5 years and a daughter aged 3 years. Jenny is White British.
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, we’ve 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 she’s kind of... it’s become, becomes more and more obvious as her peers’ speech has developed.
- Age at interview:
- Millie and Michael are both White British and have a son of 7 months who was born with a cleft lip and palate. Millie is a full-time mother and Michael is a lifeguard.
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, there’s people talking about it, there’s 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?
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 we’ve 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, “We’ll make fun of it.”
Millie: But it’s, that’s the best way to deal with things, isn’t it? But nobody’s, it’s like my friend, she’s 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?
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: And I’d be the sort of one that would be like, “Yeah he’s 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?
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.
- Age at interview:
- Michelle is White British, married and currently works part-time as a local authority administrator. She has two sons and the eldest was born with a cleft lip and palate.
Yeah [laughs] yeah, loves socialising.
Is he at a preschool group?
Yeah he’s at playgroup, yeah.
He’s been there for just over a year now. Yeah he’s fine, he loves it. No, he’s 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 he’s...
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 he’d 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.
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 we’d 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…
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... he’s still our baby, it doesn’t matter what he looks like.
- Age at interview:
- Mary is a full-time mother and works voluntarily for a cleft charity. She is married with two sons of 15 and 12 years. Mary is White Australian.
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, he’s 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.”
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.
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.
And that’s the only thing, you know, sometimes. But I think it’s less and less now people will use the harelip.
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.
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.
- Age at interview:
- Iva is a Bulgarian living in the U.K. Iva is currently studying for a PhD in marketing and is married with a son of 11 months.
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.
Even I have a...
So would you say it kind of adds some character?
Yes oh definitely, definitely.
Because there are a lot of like famous people with clefts.
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 he’s 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.
- Age at interview:
- Natalie is White British and has a daughter of 19 years and two sons of 16 and 13 years.
I’d like to think that he’s... OK [laughs]. He’s a normal 13 year old, can be a right pain in the neck. I think he’s 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, he’s always cheerful, he’s quite a... I wouldn’t say he’s massively confident, but he’s fairly confident. He’s got lots of friends and he’s just really normal, I think.
What sort of interests does he have?
Sporting, he’s really, really into sport yeah. He’s 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…
He’s 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, he’s not up there necessarily... he’s, he struggles a little bit with his English. But he gets lots of help at school. And… he’s not going to be any great academic, and he’s not desperately into his studying or, you know, he’s 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 he’ll 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.