Pre –operative care and surgery
- 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: That’s a big operation because their faces change so much.
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?
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.
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.
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…
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.
- 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.
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.
...I couldn’t do it because I didn’t want to see that whole thing; that was just too much really.
...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...
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.
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.
- 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.
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?
Michael: Yeah once obviously he was born, like I had a month off work when he was first born.
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?
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.
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.
Michael: Yeah braces, but... it was just normal, I suppose, to me.
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.
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: 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.
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.
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?”
Michael: So we started looking at it like that, didn’t we?
Michael: Which made it a lot easier.
Oh so you tried to think of it as a positive thing?
Millie: Yeah we’re like that, aren’t we, everything’s a positive?
- 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.
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, 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.
There is a covering, so there could be a gap there which…
…is covered with a thin layer of skin?
Yes, yeah and they said during the surgery, because when the baby’s under the…
…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.
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…
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?
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.
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.
- 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.
OK so has she had her first operation, has she had the repair done?
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.
Rebecca: So we were, we were panicking, weren’t we?
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?
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.”
- Age at interview:
- Safiya is a single mother of a two year old son. Safiya is a full time student and is mixed race.
So you mentioned that the palate had to be repaired again?
So what caused that, the initial repair to fail?
They said they didn’t actually give a reason; they said it happens to about one in a hundred children, I think they said.
They said it can just happen, sort of the stitches can be done too tight and they can... split.
Right hmm. So how long was it after the first operation that it split?
I think I noticed about two weeks after. I remember [son’s name] was crying, and I put him down on my bed and I looked in his mouth, and I just saw this gap. And I thought... “I’m sure that wasn’t there like the other day.”
So I rang the cleft nurse and I said to her like, “[son’s name] has got this gap.” And she was really good, she made an appointment to see me sort of as soon as possible really: I think she came within the next few days. She had a look in his mouth and she said, “Yeah, I think it’s split, but let me make you an appointment with the surgeon to double-check.” And that was quite quick as well: I think that was in... within the next few weeks.
We went to my local hospital, we saw the surgeon, he looked in my little boy’s mouth and he said, “Yeah it’s split. We’re going to have to do another operation.” Even though I knew it had split... it was still a shock, and I remember [laughs] crying.
- Age at interview:
- Laura is a trained nursery nurse and is 22 years of age. Laura and her partner have one daughter aged 6 months. Laura is White British.
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.
- Age at interview:
- Andrew and Diane are married and both White British. Andrew works full-time as a scrutiny officer for a housing association and Diane works part-time as an administrator for a publishing company. They have one 2 year old son.
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.
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.
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
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.
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.