Millie and Michael – Cleft lip and palate

Millie and Michael first found out that their son would be born with a cleft lip at their 20-week scan. When their son was born it discovered that he also had a cleft palate. Michael and his father were also born with cleft lip and palate.

Millie and Michael have a son of 7 months who was born with a unilateral cleft lip and palate. Michael was born with a cleft lip himself and his father was born with a cleft lip and palate.

Millie and Michael first found out that their son would be born with a cleft lip following their 20-week scan. When their son was born it discovered that he also had a cleft palate. As Michael and his father had both been born with clefts it was disappointing but not a huge shock for Michael. Millie was more upset by the diagnosis and it took a long time for her to come to terms with it.

Michael and his father had not suffered many negative experiences from growing up with a cleft, but Millie and Michael were concerned about the medical procedures and intervention that their son would have to go through. When Millie and Michael’s son was born he was not able to breastfeed and this was a big disappointment for Millie, who had really wanted to breastfeed. Millie also experienced difficulties expressing milk to enable her feed her son with the specialist squeezy feeding bottles. Millie has found emotional and practical support through their son’s specialist cleft nurse and informal meetings with other mothers of cleft babies.

Millie and Michael’s son had his lip repair operation when he was 3 months old. The couple attended a meeting with a group of health professionals including the surgeon, psychologist, speech and language therapist and a dentist that would be involved in their son’s care in the years to come. They found this a daunting experience but they were prepared to put their trust in the health professionals and the operation went ahead successfully. Following the operation their son’s arms were splinted so that he would not pick at the wound on his lip. The splints and the healing wound on his lip attracted the attention of members of the public in the street and many people asked them questions about his appearance. Millie and Michael said they missed their son’s smile as it was before the operation.

Their son is now beginning to speak, loves books and being read to. He is making good progress with making sounds and will also have the support of a speech therapist when he is about a year old. Millie and Michael have made new friends through their involvement in cleft support groups and continue to support each other through the ongoing treatment for children born with cleft lip and palate.

Millie and Michael were visited by a CNS soon after the birth of their son. They felt very relaxed with her and she was gave their son his first feed by bottle.

Age at interview 20

Michael: I think it was within two days she turned up at our front door and

Millie: Yeah and then shed come with us while we had the scans. She listened, didn’t she really?

Michael: Yeah answered any questions we had about it.

Millie: Hmm cried, she was there.

Michael: Yeah.

Millie: She was down to earth, wasn’t she? She was brilliant, she was absolutely brilliant with it. Because she wasn’t… she didn’t talk to you like a medical professor or whatever..

Oh OK.

Millie: professional. She talked to you like a mother and friend, didn’t she?

Michael: Hmm.

Millie: And she explained it when people explained it to me and I was like, Don’t know what that means.

OK so she helped interpret the medical language?

Millie: Yeah she was brilliant, wasn’t she? With, not even just with cleft base, it was things like I was scared with being a first time mum, she helped with things like that, didn’t she?

Michael: Yeah just an all-round great person.

Millie: Yeah she was brilliant, wasn’t she?

Michael: Yeah.

Millie: I mean when I had [son’s name] I mean she was there within the hour as soon as I’d given birth to him. I’d gone back down to the ward and she was there, and it was, it was such a lot of help, because I was like, How am I going to feed him? I don’t know how to feed a baby with a cleft. And she gave him his first feed, didn’t she?

Michael: Yeah.

Millie: She fed him for the first time.

Embed Print Transcript

Millie and Michael felt daunted when they attended their first MDT meeting with many different health professionals discussing their sons’ future treatment.

Age at interview 20

Yeah, but I was just thinking in terms of the medical profession and the health professionals, how did they help to

Millie: We went for

prepare you and keep you informed about

Millie: a meeting, didn’t we?

what they were going to do?

Millie: And there was about seven people in this room, weren’t they?

OK and who were they, those people?

Millie: There was the surgeon, the surgeon’s trainee woman, a speech therapist, a dentist, [name] our cleft nurse, and other, there were just loads of people.

Michael: Oh there was a psychological.

Millie: Yeah there was a psychologist there.

Michael: Psychologist.

OK.

Millie: And it was scary, and I don’t think they should have done it that way.

Michael: Yeah it is a bit daunting that, I suppose, yeah, obviously sat in a room full of people all

Yeah can you talk to me a bit more about that? What way did you find it difficult?

Michael: Phew obviously it’s a bit of an upsetting situation going in and… Dr [name] telling you about, you know, what they’re going to do with your son, operate on him, and this, that and that. And then you’ve got plenty of people sat round that you’ve never met before all, you know, staring at you, taking notes.

Millie: Yeah.

Michael: It’s just a bit of an uncomfortable situation.

Millie: Oh God yeah it was horrible.

Michael: Yeah you didn’t really cope.

Millie: No.

How long were you in that meeting room together for?

Millie: An hour, weren’t we, we were in about. But they were checking his mouth, weren’t they, and they made him choke. And at that point it was like… I couldn’t do it after that.

They did what, sorry?

Millie: They were examining his mouth, weren’t they?

Michael: Yeah and he started like choking a little bit obviously with the mirror going in his mouth and having a feel around.

Millie: Hmm and I wasn’t happy at that point, was I? And then they took us to a psychologist, didn’t they? And she was asking us things like how were going to cope when he goes to school. And I thought it wasn’t really necessary at that point: he was three months old.

Yeah.

Millie: [laughs] It was like

Michael: Whereas I just came out with the answers, because obviously I’ve been there and done it.

You’ve been through it, yeah.

Millie: Yeah it was, it was stupid that really, because she was, How would you feel when hes going to go to school? I said, I’ve just got his operation date; I’m not thinking about when he goes to school.

Michael: Yeah that was

So you’re there dealing with the here and now

Millie: Yeah.

and they’re talking about something that’s going to happen in five years.

Michael: Yeah it wasn’t really the greatest thing to do I suppose.

Millie: Pointless, wasn’t it really, yeah?

Michael: So I just got that one out the way straight away.

Millie: Yeah but it was, that, that was, like the speech therapist, I don’t think there needed to be that many people there

Oh OK.

Millie: when they didn’t need to be there. I just think it made us… a bad situation worse, didn’t it, in a sense like?

So did you feel overwhelmed?

Millie: Yeah, yeah. So he wasn’t going to be talking any time soon, so I don’t need a speech therapist, certainly didn’t need a [laughs] psychologist. It was, and a den, they had dentist there as well, didn’t they? And I thought, You people don’t need to be here. Hes, you know, hes three months old, hes not speaking and he hasn’t got any teeth. So we could have met them later on down the line, couldn’t we? It would have been a lot better for us.

OK.

Millie: It would have been a hell of a lot better. In that way we just… weren’t happy about that. I didn’t really cope with that very well, did I?

Michael: No, it was a bit of a tough day, that one.

Millie: Yeah it was a bit.

Michael: Hmm.

Embed Print Transcript

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

Age at interview 20

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

Michael: It’s not comments really.

Sorry, you wouldn’t take him out?

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

Michael: Hmm.

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

Sure.

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

Michael: Hmm, hmm.

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

Michael: Well young mums.

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

Michael: Yeah.

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

So they tried to think of something positive to say?

Millie: Yeah.

Michael: Yeah.

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

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

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

Michael: Yeah they were really interested about it.

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

Michael: Hmm.

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

Michael: You get the occasional stare.

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

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

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

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

Millie: Yeah.

Embed Print Transcript

Millie and Michael understood the hereditary nature of cleft as both Michael and his father were born with a cleft lip and palate. The couple also had genetic counselling to consider the risk of a further child being born with a cleft.

Age at interview 20

So when did you first learn that your son was going to be born with a cleft lip?

Millie: We got, I went for my normal scan, didn’t I, because I found that I was pregnant quite late on. And then I had to keep getting scanned. And then they found out your history, didn’t they?

Michael: Hmm.

Millie: And sort of kept scanning me and scanning me, and sending me to specialist scans. And we went through a 3D scan in the end, didn’t we? And that’s when we found out [son’s name] had a cleft lip. But we didn’t, they didn’t tell us he had a cleft palate till he was born, did they?

Michael: Yeah, I knew… in the back of my mind when I heard the child 90% probably born with cleft lip, maybe palate, don’t really know to be fair.

Because you’ve got a cleft yourself?

Michael: Yeah I’ve had it, and my father’s had it, so I just assumed that it’d carry on within the family.

So did you have the cleft palate as well or just?

Michael: I had a slight notch just out my gum; I didn’t have the full palate.

So when your wife was pregnant, you did expect to have some cleft, or did you think it was likely?

Michael: Yeah I knew there was a very, very good chance of him having a cleft lip, maybe the palate.

Millie: Hmm I was the opposite. I kept thinking, No it’ll be alright, he won’t have one, didn’t I?

Michael: Hmm.

Millie: I was thinking it would be fine, but he did, didn’t he?

Michael: Hmm.

Did you get any genetic counselling at all at this point in time when you?

Millie: No we didn’t, did we?

Michael: No, weve just recently been through it, only the past few months, I believe. And that’s just to find out it’s just kind of like a national database where they can obviously medical research it, and then well find out, if we have more children, with they or will they not be born with it? And the same with if [son’s name] he has children, whether he will, you know, have kids with cleft lip and palate or not.

Embed Print Transcript

Millie and Michael found the MDT meeting overwhelming as, at that time, it was not clear what their son’s future needs would be. Both Michael and his father Mally and have their own experience of living with a cleft.

Age at interview 20

I was just thinking in terms of the medical profession and the health professionals, how did they help to

Millie: We went for

..prepare you and keep you informed about

Millie: a meeting, didn’t we?

what they were going to do?

Millie: And there was about seven people in this room, weren’t they?

OK and who were they, those people?

Millie: There was the surgeon, the surgeon’s trainee woman, a speech therapist, a dentist, [name] our cleft nurse, and other, there were just loads of people.

Michael: Oh there was a psychological..

Millie: Yeah there was a psychologist there.

Michael: Psychologist.

OK.

Millie: And it was scary, and I don’t think they should have done it that way.

Michael: Yeah it is a bit daunting that, I suppose, yeah, obviously sat in a room full of people all.

Yeah can you talk to me a bit more about that? What way did you find it difficult?

Michael: Phew obviously it’s a bit of an upsetting situation going in and… Dr [name] telling you about, you know, what they’re going to do with your son, operate on him, and this, that and that. And then you’ve got plenty of people sat round that you’ve never met before all, you know, staring at you, taking notes.

Millie: Yeah.

Michael: It’s just a bit of an uncomfortable situation.

Millie: Oh God yeah it was horrible.

Michael: Yeah you didn’t really cope.

Millie: No.

How long were you in that meeting room together for?

Millie: An hour, weren’t we, we were in about. But they were checking his mouth, weren’t they, and they made him choke. And at that point it was like… I couldn’t do it after that.

They did what, sorry?

Millie: They were examining his mouth, weren’t they?

Michael: Yeah and he started like choking a little bit obviously with the mirror going in his mouth and having a feel around.

Millie: Hmm and I wasn’t happy at that point, was I? And then they took us to a psychologist, didn’t they? And she was asking us things like how were going to cope when he goes to school. And I thought it wasn’t really necessary at that point: he was three months old.

Yeah.

Millie: [laughs] It was like

Michael: Whereas I just came out with the answers, because obviously I’ve been there and done it.

You’ve been through it, yeah.

Millie: Yeah it was, it was stupid that really, because she was, How would you feel when hes going to go to school? I said, I’ve just got his operation date; I’m not thinking about when he goes to school.

Michael: Yeah that was

So you’re there dealing with the here and now

Millie: Yeah.

and they’re talking about something that’s going to happen in five years.

Michael: Yeah it wasn’t really the greatest thing to do I suppose.

Millie: Pointless, wasn’t it really, yeah?

Michael: So I just got that one out the way straight away.

Millie: Yeah but it was, that, that was, like the speech therapist, I don’t think there needed to be that many people there.

Oh OK.

Millie: when they didn’t need to be there. I just think it made us… a bad situation worse, didn’t it, in a sense like?

So did you feel overwhelmed?

Millie: Yeah, yeah. So he wasn’t going to be talking any time soon, so I don’t need a speech therapist, certainly didn’t need a [laughs] psychologist. It was, and they had dentist there as well, didn’t they? And I thought, You people don’t need to be here. Hes, you know, hes three months old, hes not speaking and he hasn’t got no teeth. So we could have met them later on down the line, couldn’t we? It would have been a lot better for us.

OK.

Millie: It would have been a hell of a lot better. In that way we just… weren’t happy about that. I didn’t really cope with that very well, did I?

Michael: No, it was a bit of a tough day, that one.

Millie: Yeah it was a bit.

Michael: Hmm.

And so going back to this, you said there was a psychologist there, did the psychologist offer any support, or did they ask you about your own welfare at all?

Millie: Yeah they did, didn’t they? But it was more concentrating on things that were later on in [son’s name] life and… we just didn’t need that, did we?

Michael: Hmm.

Millie: You know, for some people, say like people who are on their own, and things like that, I can see it’s a good thing. But

Michael: Yeah but obviously.

Millie: we support each other, don’t we?

Michael: Yeah and they knew I’ve had it and my father’s had it so

Millie: Yeah.

Embed Print Transcript

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

Michael: Yeah it’s like when he was born, when he was born, sorry, and you know that hes got it coming up, and hes 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 hes 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 hes 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 hes going in for an operation, hes 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, hes 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, theres 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: Weve been to the cleft group and that, and weve 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 were like that, aren’t we, everything’s a positive?

Embed Print Transcript

Millie and Michael’s son had his arms splinted following a lip closure operation to stop him picking at his scar. Seeing a baby with splinted arms attracted attention from the public.

Age at interview 20

Millie: The more we had was when hed had his op, that’s when we got stares, but it wasn’t because of his lip, it was splints on his arms.

Oh OK.

Millie: And [laughs].

Could you explain why they splint the arms?

Millie: It’s so that they can’t get at the mouth and so he can’t pull at his glue and things like that.

Michael: Stitches.

Millie: And his arms were like that, weren’t they?

Michael: Yeah you’d have thought he wanted a cuddle all the time.

Millie: And people were sort of like, you know, Oh what’s wrong with his arms? And I just got fed up one day, didn’t I?

Michael: Yeah, you know, because it’s every five minutes, Oh what’s up with his arms?

Millie: Yeah and I told someone [laughs] I’d broke his arms, didn’t I?

Michael: Yeah cos they wouldn’t shut up.

Millie: This bloke was like, What’s wrong with them? I said, Oh I broke his arms; he wouldn’t shut up. And a lot of mums have had that, haven’t they? Somebody, one of the other mums had… in Marks & Spencer’s, a woman coming up saying her son had a bogie on his face, and it wasn’t, it was his glue, because it goes black, doesn’t it?

Michael: Yeah.

Millie: And they’re like Hitler? [laughs] with all this black glue.

So it looks like a black moustache?

Michael: Yeah it’s pretty much half of it.

So do they use glue instead of stitches, is that what they do?

Michael: It’s so they can’t pick the stitches, if he does get hold of them.

Oh it covers the stitches?

Millie: Yeah, but that’s funny, isn’t it?

Michael: It seems to just attract dirt there so it turns black. But as it starts peeling away it turns into like a little square Hitler tache.

Millie: But we have people, yeah, we had a lot of people saying, Oh what’s he done to his arms? and things like that. And I was like, Hes had an operation. They didn’t even notice his mouth, did they? They were more bothered about this tiny baby with his arms out like that; couldn’t get in his pram and things and that was a… that was, that was funny. I think because of the relief of, you know, all his operation, being pent up, and the relief, we just found that funny, didn’t we?

Michael: Yeah.

Millie: Because he could pull his splints off, couldn’t he?

Michael: Yeah hes sussed that one quick.

Millie: Yeah he was really clever: he just used to put his arm and pull his arms out. And the amount of times we found him sat there like with his splints off, chewing his hand, and things like that, didn’t we?

Michael: Yeah.

Millie: Yeah it was funny after that. After that it was so much relief, wasn’t it?

Embed Print Transcript