Cleft Lip and Palate
Pre –operative care and surgery
A child who is born with a cleft lip and /or palate in the U.K. will usually have the cleft in the lip closed (operated on) at 3 months of age and the cleft in the palate closed at 6 -9 months of age. These children may also need other operations throughout childhood and into adulthood (see ‘Cleft treatment pathway’). It is not always necessary for a child with a very small cleft lip to have an operation – sometimes small lip closures are done only for cosmetic reasons. All of the parents we spoke to whose child had a cleft lip had agreed that their child should have their lip closed at approximately 3 months of age. Similarly, all parents whose child was born with a cleft palate had consented to have their child’s palate closed or were making preparations for future surgery. Prior to having a cleft lip and/or palate repair it is important that the child is free from coughs and colds, chicken pox and other viral infections as the surgical team will not operate if a child is unwell. This can delay the closure of a cleft lip and/or palate.
Tamsin: That’s a big operation because their faces change so much.
Yeah.
Tamsin: And... we were warned about it. We’d been shown so many photos. Our cleft nurse had brought us photos firstly, but then also you go out and you meet other cleft parents and they show you obviously their photos as well. So you, and that becomes a bit more real because you’ve got the real child there as well as the photos of what was before. And... that was a big, a big change wasn’t it?
Andrew: Yeah.
Tamsin: But actually... yes, you do... you take loads of photos beforehand, you want to keep this record of what they are previously. And then you go in and you’re so scared about this operation that’s going to happen, and you’re so scared about what... the, how the face is going to change.
They come back from their operation and you get on with looking after them, because you’ve got to look after them, and actually I don’t know about you, but to me I just got on with the next bit so, of having to clean it, and actually it and seeing... cleaning the scars and seeing... it almost appear. But then to have him, he bounced back so quickly, he was smiling again, and OK it was a different smile, but he still had a really wide, big smile, didn’t he?
Yeah some people say they miss how their child looked before, I don’t know, was that something, did you perhaps feel like that?
Andrew: W ...
Tamsin: A week before his operation he’d also got his glasses, so he’d changed already then. And then we had this operation and it... I didn’t miss it, it was different though.
Andrew: I think it’s something that I had accepted it was a path that we were going down.
Tamsin: Yeah.
Yeah the sort of process?
Andrew: And it’s, it’s a step towards... [son’s name] better future really, I think, is, is we felt. So…
Tamsin: I can remember…
Andrew: …and funnily enough, we never... when we went in for the initial meeting at the hospital the cleft nurse said, “Oh well done for deciding to do it,” because it’s a cosmetic, it’s not, the cleft wasn’t a life-threatening condition. If we had done nothing about it, [son’s name] would be absolutely fine to go through his life and then decide if he wanted to do something in the future. And she said, “Oh well done for choosing to do this cosmetic thing,” and it had never really twigged [laughs] with us that it was a, it was a choice.
Tamsin: a choice, no, we just…
Andrew: We just kind of went, this is what we felt was the best thing for [son’s name], and seeing that first stage was [deep breath].
OK so would you say there was an expectation that that was the path you would take?
Tamsin: Yes, and we just... we just dealt with it. We knew he was always going to change.
Yeah.
Tamsin: Actually it was his second lip operation as well, when he, we weren’t…
Andrew: …that was more of a shock.
Tamsin: …we weren’t as, for some reason we didn’t prepare ourselves as much for the second one, which again, because it brought everything in…
Yeah.
Tamsin: it was, it wasn’t a bigger change, but it was... another change that we hadn’t, for some reason, I suppose we hadn’t seen so many photos and we hadn’t met so many people who actually talked about that second operation and the change. Because it’s actually... it’s a bilateral thing, the second operation, if you’ve got a bilateral cleft lip you probably do have two; they don’t, they don’t always do them in one.
Sorry, so the first one, was it just one side then?
Tamsin: No, no, no they did do both sides. It was it’s just that because it’s a, it’s more of a cleft, I suppose, he needs more intervention to make it complete.
All families have the opportunity to discuss any surgery their child might undergo at a multi-disciplinary team (MDT) meeting and they can ask questions directly to the surgeon who will perform the lip and/or palate closure. A clinical nurse specialist (CNS) will also be contactable to answer any questions that families might have regarding surgery for cleft lip and/or palate.
He started off...with nothing until he was three months old, and then he had the first operation for the lip.
And he had a collapsed nostril as well, so that all had to be brought together.
And... that didn’t take very long for him to recover at all, we were really surprised. Obviously he was uncomfortable and it wasn’t very nice for him, but within a couple of days it was like he hadn’t even had the operation.
Oh really? Hmm.
Yeah he coped really, really well. But…
How did you feel about that? How did it feel handing your son over?
I couldn’t go downstairs with the baby; Paul took him.
OK.
...I couldn’t do it because I didn’t want to see that whole thing; that was just too much really.
Yeah sure.
...It was upsetting definitely... however, I don’t know, it’s hard isn’t it? Because you’re, you want them to have the operation because you want them... to be normal [laughs] whatever normal is. But you don’t know how they’re going to cope, you don’t know whether or not they’re going to have a reaction to the anaesthetic, all that sort of stuff, it’s all new. And I’ve never had a... a big operation myself so, you know, I couldn’t even relate to it, I wouldn’t know what it’s like to have to be in that position.
So how old was he then?
He was three months.
Three months yeah.
...I think because we had the paediatrician in the family, it was kind of she was our support in terms of, you know, she’d tell us that he’s not going to remember the operation, he’s not going to know the pain, he’s not going to... it’s, you know, you just...
Yeah.
Once it’s done, it’s done, and you’ll be glad that it’s been done, you know, it... there is a reason for it, as such. Even though it wasn’t like life or death or anything, you know, there was an outcome to it that was going to be worth it.
Sure
So... I have to say I tried to just, the whole way through, I just tried to be a bit detached, not from him, but from the situation, because that was the way that I coped.
One of the issues is that any surgery on the face will alter the child’s appearance and so parents and other family members will need to adapt to the fact that their child will look different after the operation.
Michael: Yeah it’s like when he was born, when he was born, sorry, and you know that he’s got it coming up, and he’s constantly in the back of your mind.
Millie: Yeah it is, isn’t it?
Michael: And you are dreading it. I was really dreading it, to be fair, but I didn’t let on about it.
Millie: It stressed us out, didn’t it?
Michael: Yeah but…
So the period between birth and knowing that he’s going to have the three month operation?
Millie: Yeah.
Michael: Yeah once obviously he was born, like I had a month off work when he was first born.
Yeah.
Michael: And it was, you know, constantly with him and just, you know, and then when like life got back to like normality, like your routine, when I was at work I had five minutes and that and I’d be sat thinking, “Oh he’s got the operation coming up soon,” sort of thing, it was always in the back of your mind. And... it wasn’t... I suppose really bad, but it was just there like niggling at you.
Millie: It caused a lot of arguments and stress between us, didn’t it?
Between the two of you?
Millie: Yeah it did cause a lot, we argued a hell of a lot, didn’t we?
Michael: Hmm.
Millie: Because I stress, and [son’s name].
Did you feel able to talk to each other about it as well or?
Millie: Yeah sometimes, didn’t we? But Michael is a man, and he doesn’t speak, and I was getting mad because I thought, “You don’t care,” [sobs] and it was that, wasn’t it?
Michael: Hmm but like I said, obviously I’ve been through it all, so I knew there wasn’t as much to worry about as…
Millie: …as what I was expecting [son’s name].
Do you think that’s partly why you?
Michael: Yeah why, yeah, why I closed up, well not closed up, but didn’t come across as upset as obviously you was.
Millie: Yeah.
Michael: Because I know, end of the day, everything’s alright.
Michael: So... I wouldn’t say I forget I’ve had a cleft lip and palate, just a cleft lip, sorry, but... it’s not something I wake up and think about every day.
Millie: No it’s not, is it?
Michael: Yeah obviously before [son’s name] was born, once I grew up it never ever... really got mentioned, to be fair.
Michael: Apart from when I was in primary school I had to go to speech therapy every now and again and... occasionally a couple of dentist appointments and check-ups more than the average kid.
Millie: Braces.
Michael: Yeah braces, but... it was just normal, I suppose, to me.
Millie: Yeah.
It’s all you knew?
Michael: Yeah so I’ve never, like I say, I’ve never really had a bad experience with it. So I knew, yeah, it’s not nice he’s going in for an operation, he’s got to be put to sleep, [son’s name] bit upset for a few days, sort of thing. That was the bit that upset me the most. It wasn’t, “Oh it’s a cleft lip and palate,” it was the operation side of it.
Millie: Yeah, yeah.
Michael: Any operation, it’s not nice.
Millie: Yeah it’s what got to us, wasn’t it?
Michael: Yeah it’s hard to shake the hand of somebody you know that’s going to be, you know, putting your son to sleep, sort of thing, and causing him a bit of pain, but at the end of the day it’s for a good cause.
Millie: Yeah.
Michael: But, end of the day, he’s a top bloke, I suppose.
Millie: After [son’s name] had had his op I nearly cuddled him, didn’t I? And I sort of had to…
You nearly cuddled the doctor?
Millie: Yeah.
Michael: Yeah.
Millie: He said, “Oh you can go home,” and I sort of went to cuddle him, and I thought, “What are you doing?” And it was after that I saw him in a different light.
Yeah.
Millie: But before that operation I absolutely hated him: he was taking my baby’s smile away.
Michael: Yeah that was another really hard thing: obviously, you’ve grown… boof, there’s your son, that’s what you fall in love with, and then it’s, well, they’re going to change, well not change him but obviously…
Millie: Change his smile.
Michael: Change his smile, which is a big thing for a parent, I suppose.
Sure, especially at that age.
Millie: Yeah.
Michael: We’ve been to the cleft group and that, and we’ve mentioned that to the other parents that have been through it, and they were like, “Well how many other parents can say well they’ve seen two smiles what their kids had?”
Millie: Hmm.
Michael: So we started looking at it like that, didn’t we?
Millie: Yeah.
Michael: Which made it a lot easier.
Oh so you tried to think of it as a positive thing?
Michael: Yeah.
Millie: Yeah we’re like that, aren’t we, everything’s a positive?
Knowing that their child would be anaesthetised and have an operation caused concern for parents. Many mothers and some fathers found it difficult to watch their child have a general anaesthetic before their operation. It was common for the child’s father to be there when the mask was placed on the baby’s face. Mothers’ were more likely to stay overnight in hospital – usually for one night only before the child is discharged and allowed to go home.
He had the lip repair and they said they will check again the palate because sometimes the babies could have sub-mucous, a sub-mucous cleft.
Sub-mucous?
Sub-mucous, like it means like the skin is there but, but beyond the skin I mean, you know, there is a cleft.
Oh so the lip is kind of superficial?
No, no, no not the lip. It’s about the palate. I mean sometimes the palate could, could look absolutely fine, but actually just the skin is there but... but there is still…
OK, only a covering.
Yeah.
There is a covering, so there could be a gap there which…
Yes.
…is covered with a thin layer of skin?
Yes, yeah and they said during the surgery, because when the baby’s under the…
Anaesthetic?
…yes, it’s easier to check , to check in details. So he was checked again, and again everything was fine. The lip repair surgery was maybe one hour and something, or two hours, it was very, very ... difficult.
That was difficult for you, OK.
Very difficult, especially to see how the baby is going into the ward this moment when they are taking the baby to…
Oh when you say goodbye and?
And you know you are seeing your son for last time with this cleft that is so cute [laughs] so…
OK other people told me about this: it’s quite often a difficult time.
Yeah, yeah very, very difficult, very, very difficult, and I was crying like…
And so could you explain a bit more about that, are you happy to do that?
Yeah, yeah, yeah just... it wasn’t really the best time in my life, if I have to be honest; it was very difficult. Maybe a month before the surgery I was already nervous, getting nervous about everything, anxious. And we went for the surgery, we stayed in the hospital, I was with the baby in one room, my husband as well stayed in the hospital but in another like parent apartment or something. We were lucky that it was free so he, he could stay there and be, be with us. ...And they made a lot of check-ups on the baby. And on the next day in the morning, I think the surgery was scheduled for the next day in the morning. So the morning came and we were very... very worried. And... I knew I couldn’t... I couldn’t be the person to take the baby to the ward.
Yeah sure.
So I stopped in front of the ward and I said to my husband, “If you want, you could be with him during they are giving him the... you know…
The anaesthetic?
…the anaesthetic.”
Did they use a mask?
I think so. I don’t know, because I stayed. I knew that if you, if my husband wanted he could go with him, if not just I can’t, I knew.
So in the end your husband went?
Yes he went there, because I knew that I would be crying a lot and it won’t be helpful.
How did he manage with that, was he OK with that?
Oh my husband?
Yeah.
I saw that when that when he was coming he was coming back his eyes were red and he was starting to cry again. But I said to him, “Just don’t, just don’t cry, don’t cry.” And we went in the chapel.
The chapel?
Chapel, sorry yeah that one.
Yeah, yeah and yeah, just prayed for a few moments for him. And we went in the café, we had a coffee and we were waiting and waiting and waiting. It was an awful wait.
A long wait?
Yeah a long wait. And we went upstairs in the parent apartment where my husband was living. And at one point, I don’t remember for what, I, I went out, and when, and saw one of the nurses that I saw in the ward upstairs. So I ask her, “How is he? How is he?” and she said she said, “He is fine. We are just waiting; he is now in the recovery; we are just waiting a few moments to, hmm you know, for the anaesthetic to...”
To have an effect or?
Just, yeah, just to stop.
To wear off?
Yes, to wear off. And she said, “Very, very soon we will call you and you will be able to see him.” And after maybe ten minutes, very good that it was, we were very, I was very happy because he... I don’t know what’s the, the word, wear off you said maybe. He just recovered very quickly from the anaesthetic.
The surgery to close cleft lip and palate can take between 2 and 3 hours but this depends on the type of cleft (unilateral – one sided cleft – or bilateral – 2 sided cleft) and whether, for example, the nose is affected.
OK so has she had her first operation, has she had the repair done?
Rebecca: Yeah.
OK how old was she when she had that?
Rebecca: Six months and six days.
Russell: Yeah six months.
So perhaps you could tell me a little bit about that in your own words, and how that went?
Rebecca: That was... the hardest... the hardest just 24 hours of my life.
It really was. And we got there and there was... there was four of us, four babies and four parents. And we weren’t sure if Russell was going to be able to stay in the hospital with us, so he booked a hotel.
We’ve got tissues here.
Rebecca: No [laughs] I’ll be OK. He stayed in the hotel, but I stayed by [daughter’s] bed, along with, I think all the other mums [laughs] did the same as well.
You stayed by the bed?
Rebecca: Yeah and they were quite happy to allow the parents to do that. They were, the hospital staff were brilliant. And [daughter’s name] was the first one to go in. We had to go the day before and, and first thing in the morning she went in for her operation. And I think they said it would take maybe one and a half to two and a half hours, is what they expected, and five hours later she was still in the operating theatre.
Oh gosh.
Rebecca: So we were, we were panicking, weren’t we?
Russell: Yeah.
So what explanation did they give you?
Rebecca: It was harder than they expected it to be. I mean the surgeon had checked it, but I don’t think she had seen just how far forward the palate had come, had come obviously. And when she repaired it, she said it was such a tight repair that she had to put two lacerations as well, was that what she called it?
Russell: Yeah that’s what she called them.
Rebecca: Two lacerations either side of her mouth, just big... slits basically, to allow the palate to grow and heal.
Are they internal or external?
Rebecca: Internal, just either side... obviously right down the middle, the stitches, either side.
Inside the cheeks?
Rebecca: No, on the roof of her mouth.
On the roof of her mouth?
Russell: Yeah.
OK.
Rebecca: Yeah just two cuts either side. And I’ll never forget going to see her, she came, like they came and said, “That’s her out of theatre now.”
In rare cases a cleft palate can split again during the healing process after it has been closed for no apparent reason and the child will have to undergo surgery again.
Can you tell me a little bit more about the lead up to the operation and how you prepared yourself as a family?
The lead up to the operation was the most awful two weeks ever, because we only got two weeks’ notice.
Only two weeks?
Only two weeks. But if it’s got to be done, it’s got to be done. I suppose it being so soon it didn’t give you as much chance to... worry and think about things. But you’re still very... our nurse came out and gave us... a run through of what would happen when we got to the hospital, and the post-op, and then actually going up onto the ward and seeing the anaesthetist.
Because we’d already signed the consent form, so there wasn’t need to do it when we were in hospital. ...But yeah, we knew she needed it doing. It was harder because you couldn’t see anything... physically wrong with her, if you will.
Because it was inside, so we couldn’t see anything wrong with her. I think if we could see something then it would have been easier for us to... comprehend with, if you saw her there.
OK so we were talking a little bit about the lead up to the lip repair, so if you can cast your mind back to the day of the operation, the first operation, and events leading up to that?
Andy: …I don’t know, I mean it’s always apprehensive when you, when you take your child in for surgery, you know, anything like that, especially something that kind of... like that.
Diane: Yeah.
Andy: I mean...
Diane: Yeah I think I was nervous for about three months before the operation.
Andy: I was getting [laughs] just, yeah, you kind of build yourself up and go, “Yeah it’s going to be fine, it’s going to be fine. Everything’s going to be perfectly alright.” And, and, you know, and then, then you get to that kind of... you know, yeah, you’re going down and, you know, yeah, you’ve kind of said, no you couldn’t.
Diane: Yeah.
Andy: You know, you were having [laughs] kind of, you know, you couldn’t kind of do it.
Diane: All that yeah.
Andy: And it was, yeah, it was quite... you suddenly think it’s going to be traumatic. Because when you... when you see him there and... and you put the mask over him and it’s kind of... you know, and then somebody like, you know, someone takes him away, you know.
Diane: Yeah I don’t, I don’t think you can ever imagine unless you’ve been in that situation. [brief interruption] Yeah I don’t think, unless you’ve been in that situation, that you can know
Andy: No.
Diane: how it feels to hand your child over, you know.
Andy: And then you’re sat waiting for like three hours or four hours.
Diane: Four hours for the first operation, yeah.
Andy: You know, it kind of
So it must require an awful lot of trust, I imagine?
Andy: Oh I think it’s comforting to know that you’ve got the, you know, the quality of the... the surgeon that’s involved.
Diane: Hmm.
Andy: I think that certainly sort of helped. And then seeing a few sort of before and afters in what’s, you know, things like that, those... that again you see the kind of the work that can be done. I think it’s damned amazing, frankly. And... so certainly we got the confidence in you know, the surgeon, in the fact that he’s a perfectionist in what he, what he’s doing. And that, to me, is... because I’m a bit like that sometimes as well, so it was kind of nice to know that people are kind of like that.
Last reviewed June 2017.
Tamsin and Andrew describe the process they went through leading up to their son’s first surgery to close his bilateral cleft lip.
Tamsin and Andrew describe the process they went through leading up to their son’s first surgery to close his bilateral cleft lip.
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Yeah.
Tamsin: And... we were warned about it. We’d been shown so many photos. Our cleft nurse had brought us photos firstly, but then also you go out and you meet other cleft parents and they show you obviously their photos as well. So you, and that becomes a bit more real because you’ve got the real child there as well as the photos of what was before. And... that was a big, a big change wasn’t it?
Andrew: Yeah.
Tamsin: But actually... yes, you do... you take loads of photos beforehand, you want to keep this record of what they are previously. And then you go in and you’re so scared about this operation that’s going to happen, and you’re so scared about what... the, how the face is going to change.
They come back from their operation and you get on with looking after them, because you’ve got to look after them, and actually I don’t know about you, but to me I just got on with the next bit so, of having to clean it, and actually it and seeing... cleaning the scars and seeing... it almost appear. But then to have him, he bounced back so quickly, he was smiling again, and OK it was a different smile, but he still had a really wide, big smile, didn’t he?
Yeah some people say they miss how their child looked before, I don’t know, was that something, did you perhaps feel like that?
Andrew: W ...
Tamsin: A week before his operation he’d also got his glasses, so he’d changed already then. And then we had this operation and it... I didn’t miss it, it was different though.
Andrew: I think it’s something that I had accepted it was a path that we were going down.
Tamsin: Yeah.
Yeah the sort of process?
Andrew: And it’s, it’s a step towards... [son’s name] better future really, I think, is, is we felt. So…
Tamsin: I can remember…
Andrew: …and funnily enough, we never... when we went in for the initial meeting at the hospital the cleft nurse said, “Oh well done for deciding to do it,” because it’s a cosmetic, it’s not, the cleft wasn’t a life-threatening condition. If we had done nothing about it, [son’s name] would be absolutely fine to go through his life and then decide if he wanted to do something in the future. And she said, “Oh well done for choosing to do this cosmetic thing,” and it had never really twigged [laughs] with us that it was a, it was a choice.
Tamsin: a choice, no, we just…
Andrew: We just kind of went, this is what we felt was the best thing for [son’s name], and seeing that first stage was [deep breath].
OK so would you say there was an expectation that that was the path you would take?
Tamsin: Yes, and we just... we just dealt with it. We knew he was always going to change.
Yeah.
Tamsin: Actually it was his second lip operation as well, when he, we weren’t…
Andrew: …that was more of a shock.
Tamsin: …we weren’t as, for some reason we didn’t prepare ourselves as much for the second one, which again, because it brought everything in…
Yeah.
Tamsin: it was, it wasn’t a bigger change, but it was... another change that we hadn’t, for some reason, I suppose we hadn’t seen so many photos and we hadn’t met so many people who actually talked about that second operation and the change. Because it’s actually... it’s a bilateral thing, the second operation, if you’ve got a bilateral cleft lip you probably do have two; they don’t, they don’t always do them in one.
Sorry, so the first one, was it just one side then?
Tamsin: No, no, no they did do both sides. It was it’s just that because it’s a, it’s more of a cleft, I suppose, he needs more intervention to make it complete.
Michelle tells how she coped with her son having his cleft lip repaired at 3 months.
Michelle tells how she coped with her son having his cleft lip repaired at 3 months.
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And he had a collapsed nostril as well, so that all had to be brought together.
And... that didn’t take very long for him to recover at all, we were really surprised. Obviously he was uncomfortable and it wasn’t very nice for him, but within a couple of days it was like he hadn’t even had the operation.
Oh really? Hmm.
Yeah he coped really, really well. But…
How did you feel about that? How did it feel handing your son over?
I couldn’t go downstairs with the baby; Paul took him.
OK.
...I couldn’t do it because I didn’t want to see that whole thing; that was just too much really.
Yeah sure.
...It was upsetting definitely... however, I don’t know, it’s hard isn’t it? Because you’re, you want them to have the operation because you want them... to be normal [laughs] whatever normal is. But you don’t know how they’re going to cope, you don’t know whether or not they’re going to have a reaction to the anaesthetic, all that sort of stuff, it’s all new. And I’ve never had a... a big operation myself so, you know, I couldn’t even relate to it, I wouldn’t know what it’s like to have to be in that position.
So how old was he then?
He was three months.
Three months yeah.
...I think because we had the paediatrician in the family, it was kind of she was our support in terms of, you know, she’d tell us that he’s not going to remember the operation, he’s not going to know the pain, he’s not going to... it’s, you know, you just...
Yeah.
Once it’s done, it’s done, and you’ll be glad that it’s been done, you know, it... there is a reason for it, as such. Even though it wasn’t like life or death or anything, you know, there was an outcome to it that was going to be worth it.
Sure
So... I have to say I tried to just, the whole way through, I just tried to be a bit detached, not from him, but from the situation, because that was the way that I coped.
Millie and Michael discuss how they prepared themselves for their son’s cleft lip closure at 3 months knowing that he would lose the smile they were familiar with.
Millie and Michael discuss how they prepared themselves for their son’s cleft lip closure at 3 months knowing that he would lose the smile they were familiar with.
Age at interview: 20
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Millie: Yeah it is, isn’t it?
Michael: And you are dreading it. I was really dreading it, to be fair, but I didn’t let on about it.
Millie: It stressed us out, didn’t it?
Michael: Yeah but…
So the period between birth and knowing that he’s going to have the three month operation?
Millie: Yeah.
Michael: Yeah once obviously he was born, like I had a month off work when he was first born.
Yeah.
Michael: And it was, you know, constantly with him and just, you know, and then when like life got back to like normality, like your routine, when I was at work I had five minutes and that and I’d be sat thinking, “Oh he’s got the operation coming up soon,” sort of thing, it was always in the back of your mind. And... it wasn’t... I suppose really bad, but it was just there like niggling at you.
Millie: It caused a lot of arguments and stress between us, didn’t it?
Between the two of you?
Millie: Yeah it did cause a lot, we argued a hell of a lot, didn’t we?
Michael: Hmm.
Millie: Because I stress, and [son’s name].
Did you feel able to talk to each other about it as well or?
Millie: Yeah sometimes, didn’t we? But Michael is a man, and he doesn’t speak, and I was getting mad because I thought, “You don’t care,” [sobs] and it was that, wasn’t it?
Michael: Hmm but like I said, obviously I’ve been through it all, so I knew there wasn’t as much to worry about as…
Millie: …as what I was expecting [son’s name].
Do you think that’s partly why you?
Michael: Yeah why, yeah, why I closed up, well not closed up, but didn’t come across as upset as obviously you was.
Millie: Yeah.
Michael: Because I know, end of the day, everything’s alright.
Michael: So... I wouldn’t say I forget I’ve had a cleft lip and palate, just a cleft lip, sorry, but... it’s not something I wake up and think about every day.
Millie: No it’s not, is it?
Michael: Yeah obviously before [son’s name] was born, once I grew up it never ever... really got mentioned, to be fair.
Michael: Apart from when I was in primary school I had to go to speech therapy every now and again and... occasionally a couple of dentist appointments and check-ups more than the average kid.
Millie: Braces.
Michael: Yeah braces, but... it was just normal, I suppose, to me.
Millie: Yeah.
It’s all you knew?
Michael: Yeah so I’ve never, like I say, I’ve never really had a bad experience with it. So I knew, yeah, it’s not nice he’s going in for an operation, he’s got to be put to sleep, [son’s name] bit upset for a few days, sort of thing. That was the bit that upset me the most. It wasn’t, “Oh it’s a cleft lip and palate,” it was the operation side of it.
Millie: Yeah, yeah.
Michael: Any operation, it’s not nice.
Millie: Yeah it’s what got to us, wasn’t it?
Michael: Yeah it’s hard to shake the hand of somebody you know that’s going to be, you know, putting your son to sleep, sort of thing, and causing him a bit of pain, but at the end of the day it’s for a good cause.
Millie: Yeah.
Michael: But, end of the day, he’s a top bloke, I suppose.
Millie: After [son’s name] had had his op I nearly cuddled him, didn’t I? And I sort of had to…
You nearly cuddled the doctor?
Millie: Yeah.
Michael: Yeah.
Millie: He said, “Oh you can go home,” and I sort of went to cuddle him, and I thought, “What are you doing?” And it was after that I saw him in a different light.
Yeah.
Millie: But before that operation I absolutely hated him: he was taking my baby’s smile away.
Michael: Yeah that was another really hard thing: obviously, you’ve grown… boof, there’s your son, that’s what you fall in love with, and then it’s, well, they’re going to change, well not change him but obviously…
Millie: Change his smile.
Michael: Change his smile, which is a big thing for a parent, I suppose.
Sure, especially at that age.
Millie: Yeah.
Michael: We’ve been to the cleft group and that, and we’ve mentioned that to the other parents that have been through it, and they were like, “Well how many other parents can say well they’ve seen two smiles what their kids had?”
Millie: Hmm.
Michael: So we started looking at it like that, didn’t we?
Millie: Yeah.
Michael: Which made it a lot easier.
Oh so you tried to think of it as a positive thing?
Michael: Yeah.
Millie: Yeah we’re like that, aren’t we, everything’s a positive?
Iva discusses her experience of her son’s lip repair at 4 months and how she found it difficult to know that he would have a general anaesthetic.
Iva discusses her experience of her son’s lip repair at 4 months and how she found it difficult to know that he would have a general anaesthetic.
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Sub-mucous?
Sub-mucous, like it means like the skin is there but, but beyond the skin I mean, you know, there is a cleft.
Oh so the lip is kind of superficial?
No, no, no not the lip. It’s about the palate. I mean sometimes the palate could, could look absolutely fine, but actually just the skin is there but... but there is still…
OK, only a covering.
Yeah.
There is a covering, so there could be a gap there which…
Yes.
…is covered with a thin layer of skin?
Yes, yeah and they said during the surgery, because when the baby’s under the…
Anaesthetic?
…yes, it’s easier to check , to check in details. So he was checked again, and again everything was fine. The lip repair surgery was maybe one hour and something, or two hours, it was very, very ... difficult.
That was difficult for you, OK.
Very difficult, especially to see how the baby is going into the ward this moment when they are taking the baby to…
Oh when you say goodbye and?
And you know you are seeing your son for last time with this cleft that is so cute [laughs] so…
OK other people told me about this: it’s quite often a difficult time.
Yeah, yeah very, very difficult, very, very difficult, and I was crying like…
And so could you explain a bit more about that, are you happy to do that?
Yeah, yeah, yeah just... it wasn’t really the best time in my life, if I have to be honest; it was very difficult. Maybe a month before the surgery I was already nervous, getting nervous about everything, anxious. And we went for the surgery, we stayed in the hospital, I was with the baby in one room, my husband as well stayed in the hospital but in another like parent apartment or something. We were lucky that it was free so he, he could stay there and be, be with us. ...And they made a lot of check-ups on the baby. And on the next day in the morning, I think the surgery was scheduled for the next day in the morning. So the morning came and we were very... very worried. And... I knew I couldn’t... I couldn’t be the person to take the baby to the ward.
Yeah sure.
So I stopped in front of the ward and I said to my husband, “If you want, you could be with him during they are giving him the... you know…
The anaesthetic?
…the anaesthetic.”
Did they use a mask?
I think so. I don’t know, because I stayed. I knew that if you, if my husband wanted he could go with him, if not just I can’t, I knew.
So in the end your husband went?
Yes he went there, because I knew that I would be crying a lot and it won’t be helpful.
How did he manage with that, was he OK with that?
Oh my husband?
Yeah.
I saw that when that when he was coming he was coming back his eyes were red and he was starting to cry again. But I said to him, “Just don’t, just don’t cry, don’t cry.” And we went in the chapel.
The chapel?
Chapel, sorry yeah that one.
Yeah, yeah and yeah, just prayed for a few moments for him. And we went in the café, we had a coffee and we were waiting and waiting and waiting. It was an awful wait.
A long wait?
Yeah a long wait. And we went upstairs in the parent apartment where my husband was living. And at one point, I don’t remember for what, I, I went out, and when, and saw one of the nurses that I saw in the ward upstairs. So I ask her, “How is he? How is he?” and she said she said, “He is fine. We are just waiting; he is now in the recovery; we are just waiting a few moments to, hmm you know, for the anaesthetic to...”
To have an effect or?
Just, yeah, just to stop.
To wear off?
Yes, to wear off. And she said, “Very, very soon we will call you and you will be able to see him.” And after maybe ten minutes, very good that it was, we were very, I was very happy because he... I don’t know what’s the, the word, wear off you said maybe. He just recovered very quickly from the anaesthetic.
Rebecca and Russell’s daughter had her cleft palate closed and the operation took longer than they had expected
Rebecca and Russell’s daughter had her cleft palate closed and the operation took longer than they had expected
Age at interview: 23
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Rebecca: Yeah.
OK how old was she when she had that?
Rebecca: Six months and six days.
Russell: Yeah six months.
So perhaps you could tell me a little bit about that in your own words, and how that went?
Rebecca: That was... the hardest... the hardest just 24 hours of my life.
It really was. And we got there and there was... there was four of us, four babies and four parents. And we weren’t sure if Russell was going to be able to stay in the hospital with us, so he booked a hotel.
We’ve got tissues here.
Rebecca: No [laughs] I’ll be OK. He stayed in the hotel, but I stayed by [daughter’s] bed, along with, I think all the other mums [laughs] did the same as well.
You stayed by the bed?
Rebecca: Yeah and they were quite happy to allow the parents to do that. They were, the hospital staff were brilliant. And [daughter’s name] was the first one to go in. We had to go the day before and, and first thing in the morning she went in for her operation. And I think they said it would take maybe one and a half to two and a half hours, is what they expected, and five hours later she was still in the operating theatre.
Oh gosh.
Rebecca: So we were, we were panicking, weren’t we?
Russell: Yeah.
So what explanation did they give you?
Rebecca: It was harder than they expected it to be. I mean the surgeon had checked it, but I don’t think she had seen just how far forward the palate had come, had come obviously. And when she repaired it, she said it was such a tight repair that she had to put two lacerations as well, was that what she called it?
Russell: Yeah that’s what she called them.
Rebecca: Two lacerations either side of her mouth, just big... slits basically, to allow the palate to grow and heal.
Are they internal or external?
Rebecca: Internal, just either side... obviously right down the middle, the stitches, either side.
Inside the cheeks?
Rebecca: No, on the roof of her mouth.
On the roof of her mouth?
Russell: Yeah.
OK.
Rebecca: Yeah just two cuts either side. And I’ll never forget going to see her, she came, like they came and said, “That’s her out of theatre now.”
Laura’s daughter received a late diagnosis of a cleft palate and was given 2 weeks’ notice of her palate closure surgery.
Laura’s daughter received a late diagnosis of a cleft palate and was given 2 weeks’ notice of her palate closure surgery.
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The lead up to the operation was the most awful two weeks ever, because we only got two weeks’ notice.
Only two weeks?
Only two weeks. But if it’s got to be done, it’s got to be done. I suppose it being so soon it didn’t give you as much chance to... worry and think about things. But you’re still very... our nurse came out and gave us... a run through of what would happen when we got to the hospital, and the post-op, and then actually going up onto the ward and seeing the anaesthetist.
Because we’d already signed the consent form, so there wasn’t need to do it when we were in hospital. ...But yeah, we knew she needed it doing. It was harder because you couldn’t see anything... physically wrong with her, if you will.
Because it was inside, so we couldn’t see anything wrong with her. I think if we could see something then it would have been easier for us to... comprehend with, if you saw her there.
Andy and Diane were anxious in the lead up to their son’s closure of his cleft lip but were reassured by the skill of the surgeon.
Andy and Diane were anxious in the lead up to their son’s closure of his cleft lip but were reassured by the skill of the surgeon.
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Andy: …I don’t know, I mean it’s always apprehensive when you, when you take your child in for surgery, you know, anything like that, especially something that kind of... like that.
Diane: Yeah.
Andy: I mean...
Diane: Yeah I think I was nervous for about three months before the operation.
Andy: I was getting [laughs] just, yeah, you kind of build yourself up and go, “Yeah it’s going to be fine, it’s going to be fine. Everything’s going to be perfectly alright.” And, and, you know, and then, then you get to that kind of... you know, yeah, you’re going down and, you know, yeah, you’ve kind of said, no you couldn’t.
Diane: Yeah.
Andy: You know, you were having [laughs] kind of, you know, you couldn’t kind of do it.
Diane: All that yeah.
Andy: And it was, yeah, it was quite... you suddenly think it’s going to be traumatic. Because when you... when you see him there and... and you put the mask over him and it’s kind of... you know, and then somebody like, you know, someone takes him away, you know.
Diane: Yeah I don’t, I don’t think you can ever imagine unless you’ve been in that situation. [brief interruption] Yeah I don’t think, unless you’ve been in that situation, that you can know
Andy: No.
Diane: how it feels to hand your child over, you know.
Andy: And then you’re sat waiting for like three hours or four hours.
Diane: Four hours for the first operation, yeah.
Andy: You know, it kind of
So it must require an awful lot of trust, I imagine?
Andy: Oh I think it’s comforting to know that you’ve got the, you know, the quality of the... the surgeon that’s involved.
Diane: Hmm.
Andy: I think that certainly sort of helped. And then seeing a few sort of before and afters in what’s, you know, things like that, those... that again you see the kind of the work that can be done. I think it’s damned amazing, frankly. And... so certainly we got the confidence in you know, the surgeon, in the fact that he’s a perfectionist in what he, what he’s doing. And that, to me, is... because I’m a bit like that sometimes as well, so it was kind of nice to know that people are kind of like that.
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