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Cleft Lip and Palate

Telling other people about a diagnosis of cleft lip and/or palate

Anticipating the birth of a new baby is an exciting time and one that is associated with good news. This expectation can be overshadowed if parents receive a diagnosis of cleft lip and/or palate for their child: telling other people the news that your child is to be born or was born with a cleft lip and/or palate can be challenging and emotional. However, this experience may also have positive aspects: in telling other people such as family, friends, and antenatal groups families can be on the receiving end of much needed emotional and practical support. If you feel that you need or would like to talk to someone who has personal experience of a diagnosis of cleft, there are parent contacts at the Cleft Lip and Palate Association and they can put you in touch with other families in your area. 
 

Safiya, a single parent, had told her friends that her baby would be born with a cleft before telling her parents. Safiya’s friends helped her to find information about cleft and understand the condition.

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Age at interview: 21
Sex: Female
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And were you able to talk about this with any friends and family at the time?

Obviously I told my mum and my step-dad. But... they didn’t really know anything about it either.

They were kind of doing the same as me, like researching on the internet. ...And I think I actually only told two of my friends at first.

Hmm and what was their reaction?

They were really supportive. They were saying, “Safiya, of course you can do this.”

Yeah.

They were saying, “That’s your child.” Like they were just being really supportive. And they were helping me find out information as well. And they were telling me stuff that they’d researched, and come back to me saying, “Look, it’s not all this bad. This happens and this happens, but it’s different for every child.” So I think it’s... it’s hard to rely on information that you find just searching on Google or something.

What is it about Google which is difficult? What’s the most difficult part of it?

I think there’s just so much. Like there’s not one thing that you can go to. ...I suppose you can... oh I don’t know how to explain. ...There’s not like one thing you can go to where you can find out kind of everything. Google is just all little parts and all little bits and... loads of different stories. So you’ll read one that’s... kind of good, and then you’ll read one that’s kind of really bad, and you just think, “Wow... I don’t know,” it’s just confusing.

OK sure, thanks. And was this material coming from all over the world?

Yeah, and obviously places not in England it’s probably a lot worse as well, so that was kind of making me feel like, “Oh my gosh [laughs].”
Some mothers felt that they were ‘public property’ during the pregnancy such that it was common for family, members of the public and colleagues to ask how the pregnancy was going and be interested in scan results. 
 

Christie’s friends knew she was having a scan and they were phoning up to ask how it went. Christie was unsure about having to tell people there was a potential problem as she did not see the cleft as a defining feature of her son.

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Age at interview: 41
Sex: Female
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When you’re pregnant you’re kind of public property as well, people talk about it all the time, people sort of, people, you know, strangers in the street all talk to you about your baby. And I would sort of, you know, I would sort of judge really whether it was, whether… yeah, whether it seemed appropriate to mention or not really, or whether it was just, I don’t know, because it wasn’t like it was the only thing that was our experience of having this child. There was all of the usual other things, like he was enormous, and he was 10, 10 when he was born.

So did you feel like it kind of overshadowed other aspects of your child, did you feel like people were focusing on the cleft thing too much?

To be honest, I can’t remember.

No OK.

I didn’t really feel that way. It was just another… characteristic. I suppose when you’re having a child you’re kind of… during the pregnancy you’re sort of learning more about them, even though it’s not very much, not that you have much information, but you kind of start to develop a picture.

Yeah sure.

And so the cleft as… the cleft, him being enormous, him being a boy, all of that is part of developing a notion of his, who he is.
 

Jenny was unsure about talking to her parents about her daughters’ diagnosis of cleft palate at birth because she was told there was chance that her daughter could also have a genetic condition.

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Age at interview: 36
Sex: Female
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Yeah it was a really big shock, you know, it was a horrible... kind of thing to have happened. Also the doctors were saying to us that there was a one in ten chance that the cleft was part of a bigger genetic problem. ...So that was... you know, in one way that was a worry, but in another way it was kind of, well, you know, she’s our baby and we’ll kind of... whatever it is it is we’ll deal with it. But I remember kind of... ringing my mum and kind of like, “Well how much do I say over the phone?” and kind of getting my parents to come and see us in special care, and the whole thing seeming really surreal, and not really, the whole of that day not really having any sense of really what was going on. And the next day, so when she was kind of, yeah, so 24 hours after diagnosis, the specialist nurse from the cleft team came, and she was absolutely amazing: said that... well pretty much gave us the impression she thought this one in ten chance of a bigger genetic problem was kind of nonsense, because there was nothing else medically wrong with Maisie. She said if there was another problem then that would kind of seem more, more likely. But, you know, she felt it was much more likely that it was just a cleft.  And she was... you know, I think by that time I was a bit more able to... to kind of take information in.
If a diagnosis of the cleft was made during a scan parents sometimes felt it was difficult to talk about the results to family and friends as they were often unaware of the extent of the cleft: a routine ultrasound scan can only reliably detect a cleft lip. Similarly, after the birth, the extent of the condition may still remain unknown: the baby could also have a cleft palate as well as a cleft lip, there may be hearing and feeding issues as well as a need for dental care and speech therapy. In rarer cases other conditions and syndromes such as Pierre Robin Sequence (PRS), Stickler syndrome or 22q11 deletion syndrome may also be diagnosed but most babies born with a cleft do not have other problems.

There is also little public knowledge and understanding about cleft lip and palate and so parents sometimes find themselves having to try and explain a visible cleft. Parents are sometimes aware of negative comments about the way their child looks from people they don’t know well (See ‘Social interaction and public awareness’).
 

Alison and Chris found it difficult to tell other people who noticed their sons’ cleft lip prior to surgery and were aware of whispering when they were out in public places.

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Age at interview: 39
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Alison: I mean I’d been told by the cleft nurse that obviously when people see him for the first time they may have a reaction. And she said, “That will be really hard for you because you’ll see that reaction and you’ll think that that’s them thinking, oh gosh, you know, your baby’s weird or, or whatever.” And she said, “It’s not; it’s just that reaction to somebody seeing someone for the, you know, first time, they’re not sure what, etc.” And she said, “Before someone actually sort of looks at him, just mention and say actually he was born with a cleft,” and she said, “and you’ll be surprised at the reaction at that point.” That you’re bound to sort of have people, “Oh yes, I knew such and such, and they’ve got a cleft,” and their reaction was completely different then.

OK.

Alison: But I was very conscious of people looking at him and I was ... a bit concerned about your mum and dad coming, wasn’t I?

Chris: Hmm.

Alison: Because ... your mum sort of tends to speak and then think afterwards [laughs].

Chris: Yeah.

Alison: And that I couldn’t... I couldn’t be there, could I? I had to go…

OK so you had to have a strategy, so to speak?

Alison: Yes, yes.

Yeah OK.

Alison: Because I couldn’t, [laughs] at that point I couldn’t. You handled everything much better than I did anyway, didn’t you?

Chris: Still tricky though.

Alison: Yeah I don’t doubt it.

Chris: I mean... horrible feelings... you know, you [laughs] you go round the shops or anywhere and, I don’t know, but maybe it’s being a man, I don’t know, but phew, you know, everybody looks at the baby and... he’d got stitches in his face.

Was this?

Alison: That was after his…

Chris: After his operation.

OK so we’re talking now after his first lip repair?

Alison: Hmm.

Chris: Yeah and... and various people just look at the baby and then look at me. They might not have been, but it just made you feel... there’s somebody there thinking, ah, I’ve done that to the child or, you know, “Did he drop the child?” I don’t know, but I mean... you can’t stop thinking that way.

Hmm and did you get any hurtful comments at all from people?

Chris: I didn’t.

No.

Alison: No, I mean there were whisperings and things.

Chris: Yeah.

Alison: If you were out shopping and you were in the lift or, you’d hear little, “Oh God, can you see that little boy’s face?” or, you know, things like that. And... I think that was hard initially to deal with but over time you get used to it and you do toughen up. But it’s that initial... because you’re not expecting it, and you don’t know how to handle it is quite hard, isn’t it?

Chris: It is.

Alison: Because, to you, he’s your perfect little boy.
 

Becky and Mark took the time until they felt emotionally ready to tell other people, including their own family, about their sons’ diagnosis of cleft.

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Becky: I decided really, because a lot of people after the 20 week scan were, “How’s everything?” And I, we just, we couldn’t see the face, we’re having some more scans. Because I felt I... I don’t know if you felt the same, Mark I wasn’t emotionally ready to... you know, I was just still finding out that information and if anything else was involved and I just didn’t really want to be having to talk to people. And sometimes people can say, you know, the wrong thing. Perhaps they think they’re being helpful, but when, you know pregnancy, hormones are everywhere, then sometimes it’s not exactly…

Mark: We needed time ourselves to come to terms with it…

Becky: Yeah to come to terms with it, so I think…

Mark: …and find out what we needed to find out.

Becky: Yeah so close family we told. And then later on in the pregnancy we started telling people so they were aware before, you know, Daniel was born. And I think the way we basically said it was you know, sort of, “Oh yeah, we’ve found out Daniel’s got a cleft lip, we’re not sure about the palate but they’re things really that can be sorted.” And I just... and... left it at that. You know, some people asked some more questions, you know, about the surgery, when’s he got to have it done. But at that particular time we’d had the information and just felt more, more probably able…

And at the time we were both together, weren’t we, like Ethan’s school run is very often where you meet the parents.

Becky: Yeah.

Mark: And we both went together. We found it... 

Becky: Yeah.

Mark: better together, it was a bit of support for each other,

Becky: Yeah.

Yeah sure.

Mark: you know, to be there. And Ethan to be honest with you, was another one, and we told Ethan before others.

Becky: Yeah.

Mark: And we went through pictures and we just said how Daniel was special because of this. And Ethan was great, wasn’t he?

Becky: Yes before, before he was born we just showed him one or two photographs and said, “Oh, you know, Daniel’s going to be born, he’s going to have a gap in his lip, and it doesn’t hurt him. And when he’s a bit older the doctor will put it back together.” And he was like, “Oh OK.”

Mark: Hmm.

Becky: And that was it basically.

Mark: We did tell him he was special, didn’t we?

Becky: Yeah.

Mark: Then after he had the op, it was so funny, he said, “He’s not special anymore,” [laughs] as they do, they’re better than us really, the kids.

Becky: Yeah and, you know, he was just, oh well matter of fact, you know.

Mark: But we didn’t hide it away, did we then?

Becky: No.

Mark: We started, once we told people, we were quite…

Becky: And I was, I just thought would he be shocked or something? So before, when Daniel was born, we’re going on a bit now, then we just, you took a photograph on your phone, and then before Ethan came to see him, showed him the photograph, just so he would, you know, be aware of that.

Mark: And he asked questions, which is good, and we wanted him to, didn’t we, you know?
The causes of cleft lip and/or palate are not fully understood and so it is sometimes difficult for parents to explain that the reasons for the cleft are unknown. 
 

Natalie found that one of the hardest things about telling other people was not knowing the cause and the extent of the new baby’s cleft.

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Age at interview: 49
Sex: Female
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And that was perhaps why I was finding it hard to tell family and friends. Because if I could have just, if I could have, if I could, someone could have said to me, “One hundred per cent we know the baby’s just got a cleft lip,” I know that they can’t detect the palate and, you know, maybe, but if they’d just said that. ...But, you know, the medical profession can’t, there’s always got to be that caveat, hasn’t there, that, you know, there could be something else? But if they could have told me that I think I would have then thought, “Right, I can really deal with this, you know, look at, look at pictures, understand what’s going to happen in terms of surgery by talking to people, and appreciate it,” because, as everybody tells you, it is only cosmetic. You know, it’s not, it hasn’t, the baby hasn’t got a heart condition ...that you know of, that’s the thing. But, you know, in terms of just the cleft, you know that ... it’s not life threatening and, yes, they’re going to have to have some operations, but it is cosmetic, marvellous things can be done, you can get through it. But certainly from the start, having heard all that stuff from the foetal medicine people, it was like, “Oh my God, you know, what else could be wrong here?” We were offered the amnio, so of course we had to go through all of that discussion. Both decided, for various reasons, you know, my husband’s from a religious point of view, me just well, you know, I wouldn’t want to have possibility of, you know, miscarrying, so let’s just go with it anyway and forget having the amnio. But all of that is there, you know, because they have to tell you all of that, but it doesn’t really... you know, makes it hard, makes it harder than if you just thought it was a cleft.

Yeah.

So but definitely knowing, knowing at diagnosis rather than... you know…

…at birth?

…at birth, was definitely easier because, you know, my two kids were, what, 7 and... 4, 7 and 3, something like that. And particularly I don’t think the youngest boy really took it on-board, but my daughter certainly was... wanted to know and, you know, you can prepare them.

Hmm as well yeah.

It would be quite shocking, I think really, if you arrived home with a baby that didn’t look quite right.

So he already had an older brother and sister.

Yes, yeah, yeah so, you know, it was easier to prepare, as I say, the daughter was, my son was only 3 so…

Yeah.

…he didn’t really take it on-board. But yeah you could like... that made it easier. ...Trying to think, and I mean, yeah, didn’t know, didn’t, as I say, didn’t really know anybody. I would have liked to have been able to talk to somebody that had gone through it…

Yeah hmm.

…at the time, having had the diagnosis.
Similarly, it can also be difficult for mothers to explain why they were not breastfeeding their child. 
 

Maria Z did not feel comfortable with having to explain to other people in her community that she was not breastfeeding her daughter who was born with a cleft palate.

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Age at interview: 32
Sex: Female
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What was... really more awkward was the questions from people. I had no idea that it was a normal question to ask: people in the street, you know, neighbours would ask whether I was breastfeeding [laughs] and I kind of, I used to be really surprised at every single time somebody asked me whether I was breastfeeding. And, you know, it had never occurred to me to ask somebody who had just had a baby how they were feeding it [laughs]. And that was quite tough. And actually at that stage I didn’t want to go into the ins and outs; we kept it very private at first about Martha’s palate.

Yeah.

And I didn’t want for it to turn into a... discussion topic for a street corner chat.

No.

And so I always used to just say, yes, I was breastfeeding.

OK that’s interesting, yeah.

Yeah, you know, just kind of side-stepped the question completely.

Right so, yeah, it’s kind of…

Yeah [laughs].

That’s a kind of interesting statement.

Yeah, yeah I just, I wasn’t ready to go into it with other people. And I still, you know, now when I think about those early days, I still find it really upsetting, because it was a difficult time.

But certainly I wasn’t ready then to speak to people about it that I didn’t know particularly well. And, you know, it, it was... it was a really anxious time for us until things kind of settled down and we got into the groove, so yeah.
The lack of awareness of cleft lip and palate is also associated with cultural beliefs and the lack of provision for cleft services in other countries. For example, a non-British citizen said that she would have been encouraged to terminate her pregnancy or offer her child up for adoption in her home country. 
 

Iva explained that giving birth to a baby with a cleft in her home country would mean her child would receive poorer medical care. She also felt her home country would be less accepting of a child with a visible difference.

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Age at interview: 29
Sex: Female
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Unfortunately in Bulgaria the people are far behind in their understanding of cleft lip and palate, and not only this unfortunately. So my husband’s parents, they are doctors both of them.

OK hmm.

So they said, “We spoke with a lot of colleagues and most of them are saying they are young people, better to do abortion and to have another baby.” They just don’t know a lot about this condition and they are thinking, oh scary things, better just…

Is that because the treatment is not so good in Bulgaria or is it other reasons or?

I think it’s just because they are not well informed there. 

OK.

In 21st century now we have such good plastic surgeons, but unfortunately the people there are thinking that this is related to other things, they just don’t know, so they think, oh better just…

So they’re scared of the unknown?

Yes, yeah, yeah, yeah unfortunately there is a lot to do there in raising the awareness and   creating specialist teams and everything. I mean in Bulgaria we don’t have, like here, specialist hospitals dealing with…

OK so they go to a general ward?

Yeah, yeah which is not really good, because they have a good... we have good surgeons but the surgeon is not working with the orthodontist and the other people involved, so here is really…

So it’s the communication with the other services…

Hmm.

…which is lacking in Bulgaria, would you say?

Yes, yeah, yeah, yeah, yeah and general, the general awareness of the public. Because I remember I saw a study for cleft lip and palate in Bulgaria and it was saying, I’m not absolutely sure, but it was something around it was saying that around 80% of the children born with cleft lip and palate in Bulgaria their parents were consulted from the people in the hospital, from the doctors, just to leave them for adoption or offer her child up for adoption. 
However, discussion of a child’s cleft, treatment pathway and future outcomes can be a much more positive experience if it takes place within a supportive environment. By discussing the diagnosis and implications of cleft with specialists from the cleft team and other families in a similar situation parents can become more informed and develop a much clearer understanding of what the future holds for their child. 
 

Andy and Diane found support through telling other people and getting involved with their regional Cleft Lip and Palate Association (CLAPA) parent groups.

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Age at interview: 36
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Diane: We told... parents.

Andy: That was mum on the Friday, wasn’t it?

Diane: Yeah on the Friday after we’d had the second scan but I think at that point we were so confused…

Andy: Yeah.

Diane: and so distressed that... 

Andy: Yeah probably.

Diane: you know, they were... there’s not a lot they could really... do or say. But they were very supportive, you know, they were supportive…

Andy: Yeah.

Diane: …throughout. And then once we were…

Andy: clear on it, you know.

Diane: ..clear on, you know, all the information, we had all the information, then we could tell, we told all of our friends and the rest of the family. And everyone was very supportive and... you know, just... 

Andy: Yeah, yeah.

OK so did you feel supported?

Diane: Hmm.

Andy: Oh yeah I think we always have done, yeah. But, as I say, it’s just at the beginning it was just like, like I said, just absolute mayhem, like kind of, you know, trying to get your head around everything. And I think that clouded judgement and stuff like that but, you know.

Diane: But no, we never had any negativity from any family or friends.

Andy: No it was like, “We’ll be around, whatever,” you know, and so I think it’s, yeah... [laughs] way better than it’s made out to be.

So amongst both your families has anybody had any experience of cleft before?

Diane: Not families, but after we, you know, told friends and stuff, it’s surprising the amount of people that come up and say, “Oh I know so and so who had a child with a cleft,” or, “I worked with somebody who’s, you know, got a cleft,” or something so…

Andy: …it’s a lot more common than you’d think.

Diane: It is more common but obviously before you don’t really... know about it so much.

Yeah it kind of heightens your awareness, I suppose?

Diane: Yeah, yeah.

Andy: Yeah because you never... before like, you know, even like... I suppose even walking around and you know, seeing people and stuff like that, you probably wouldn’t have picked up anything.

Diane: You wouldn’t have noticed it.

Andy: But now, you know, you kind of... you kind of do in a way, you know. But yeah, but yeah, there are so many people out there, and like so many different sort of family members and friends and stuff like that that we’ve connected to and…

Diane: …who know somebody yeah.

Andy: And it’s just, it’s just, yeah... but that’s been quite…

So that’s been positive?

Andy: Yeah that, that’s been supportive in itself, you know.
Last reviewed June 2017.
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