Cleft Lip and Palate
Cleft treatment pathway
In the U.K. a baby with a cleft lip has the cleft closed at approximately 3 months of age and a cleft palate closed at approximately 6 – 9 months of age. However, a child born with a cleft lip and/or palate will be looked after very carefully by the cleft team right up until s/he is an adult. This long-term period of care is known as the ‘Cleft treatment pathway’. It begins with a meeting with a Clinical Nurse Specialist (CNS) who contacts families after the 20 week scan or shortly after the birth depending on when the cleft is diagnosed. Families will also meet with the cleft service multidisciplinary team (MDT) in the weeks after the birth. This team is made up of all the specialist health professionals who will be involved in the care of a child born with a cleft. These teams usually include a Clinical Nurse Specialist (CNS), an orthodontist (A dentist who specialises in the correction of teeth irregularities), a paediatric dentist, a speech and language therapist (SALT), one or two surgeons, an audiologist (hearing specialist) and a clinical psychologist. All of the specialists work in the cleft service because children born with a cleft require surgery to close the cleft and they may also need dental treatment (see ‘Dental and orthodontic treatment’) as well as treatment to improve their hearing and speech (see ‘Speech, language and hearing’). Some families will also want to be able to discuss their concerns with a psychologist. The CNS looks after the families throughout the majority of the treatment pathway and is a very good source of support and information.
The cleft nurse was brilliant at explaining it and gave us some... some kind of some booklets about it. ...So that kind of helped us to get our heads round it. And then we thought well, you know, because we were having problems with feeding, we were kind of like, “Well that’s the bit we need to think about.” And we kind of... the two things that we knew to think about for further down the line were the possible glue ear and the speech problems. And we knew that she would be facing surgery when she was kind of six months. But, you know, with a newborn that just felt like... a kind of lifetime away. So, to be honest, we didn’t really think about all of that stuff; we just very much were like, “Well we’ll cross that bridge when we come to it.” ...So that it was kind of, yeah, once we’d got feeding sorted, then it was kind of like, “OK surgery is the next ...the next bit we need to think about.”
So did you meet the cleft specialist team?
Yeah we met them, I suppose, when she was about two months old. ... And so by that time it sort of felt like we kind of knew what we were dealing with. And then she was ... six and a half months when she had her surgery.
Which felt really worrying in the build-up to it, and then my niece got very, very ill with meningitis, and, and nearly died, you know, couldn’t have been worse. And that... that put Maisie things in perspective. And then they ended up both having surgery on the same day which, you know, is weird how that sort of thing can happen. But it, it just reminded us that... what we were dealing with in the grand scheme of things was really not very much…
Yeah.
…compared to what a lot of families have to cope with. So that was... yeah that was, that was really helpful for us in the build-up to the surgery and the aftermath. And the surgery at that stage, you know, went really well.
And how aware have you been made of other services which will be involved in your son’s care in the future?
Becky: Yeah it was, it was really clear cut in terms of, you know, he’ll need hearing checks, the speech and language sort of service will become involved, and to get him registered with a dentist. I think it was quite a clear pathway. And I think they... I think you know where you are basically in terms of when he’ll have checks like, you know, in terms of his speech, like they’re going to give at certain ages, or if there’s concerns like, you know, anything, and the next thing is the palate, and he’ll have babble therapy workshop. And, you know, and so it’s quite, quite clear of how…
Is that babble therapy?
Becky: Yeah that’s right.
For his pre - speech?
Becky: Yes, yeah so I think you know where you are in terms of that. And I think you know…
Mark: And we know, for example, he’s got the palate operation to come, and we know that’s going to be a lot harder than lip.
Yeah.
Mark: Well even though cosmetically the lip is obviously a concern, because it’s what you can see, the palate is the one which is more painful and…
Becky: Yeah.
Mark: …it’s going to take a little bit longer for him to recover from.
Becky: Yeah.
Mark: So we are aware of timescales of things as well, aren’t we?
Becky: Yeah, yeah and I think, you know, it’s something like 50% need speech therapy, 50% don’t, so you’ve got that, you know, to go with. You think, right OK, he may or he may not. But you know, in the wider team I think they were quite clear about who is involved and when they become involved really and if there’s, you know, sort of in speech and language.
Mark: What we found so helpful as well is we sat down together, didn’t we, before all these meetings, and we did, we wrote a load of questions down.
Becky: Yeah.
Mark: And we put everything down we were concerned, and we asked them, didn’t we?
Becky: Oh even basic questions, because I was just like sort of, “Well can it ever come apart?" like, you know, and that might be a simple thing.
Oh OK yeah.
Becky: But he was just like... no question is a stupid question. But it was just like, to me, OK if he knocks it, or what about if the nose and?
Mark: But he was good, wasn’t he?
Becky: Yeah.
Mark: He said, “Look, just fire away, give me it all,” didn’t he?
Becky: Yeah I think it was, yeah, just like an A4 sheet of anything that…
Mark: Yeah.
Becky: …you know, you wanted to know.
The treatment that is provided by the cleft service depends on the type of cleft a child is born with and also the way in which s/he grows and develops. For example, a child born with a unilateral cleft lip (on one side only) may have the lip repaired at 3 months of age and require no further medical treatment. On the other hand, a child born with a cleft lip and palate or cleft palate alone may need ongoing treatment right into adulthood.
I was just amazed... how well they’d done.
I mean the repair, you just wouldn’t even know: it’s amazing what they can do.
And you had trust in the team?
Yeah, yeah I mean we were quite lucky because we ended up getting the head surgeon.
Oh OK.
So that made me feel great too. But I know that the whole team are amazing. I’ve seen all their work. You always see people, like the people that I’ve met, putting pictures up of their children after surgery, and you just think, “How the hell have they done that?”
Yeah.
It’s great, it’s brilliant.
OK so it sounds like it’s been pretty much a pretty positive experience for you and your family?
Once the surgery was done, yeah, [laughs] yeah.
Can you cast your mind back, you were talking about you met the whole team at one meeting, what was that like, what was that experience like?
You walk in and you see all these people, and obviously you worry because you think, “Why are all these people here?”
Yeah.
But... they’re there standardly. Like your child might not need... speech therapy, but they’re there just in case you need them. So it’s actually quite reassuring because you know that, no matter what the severity, your child will get the help they need.
Yeah sure.
So it’s fine. It’s just the shock of seeing so many people in there just for your child.
Yeah I can imagine.
Hmm, hmm.
And did you feel that you were able to ask the questions you wanted to ask, you know, did you feel confident to do that in that situation?
Hmm, hmm.
Yeah.
Yeah they were really friendly and helpful. And... any questions you had, even if you thought they were something really silly…
Yeah.
…they were, they were brilliant. And you always, you’re always able to contact... your cleft nurse if you have any questions or queries, and they’re very good, they’ll get back to you immediately.
OK great. And so were there any implications for your son, apart from the cosmetic surgery, were there any other implications for speech and language therapy or anything like that?
They believe that, because his palate wasn’t affected, that he shouldn’t need or require any speech therapy.
OK.
...He should be OK. It’s just going to be the notch in the gum now that needs to be repaired.
OK how old will he be when they do that?
Oh I’m told it’s between 9 and 12 years old.
OK so not for some time, yeah?
Hmm, hmm yeah it’s quite a while away, yeah.
So in terms of your son’s social development and interaction, how do you feel about that, what kind of expectations do you have about that?
Oh I think that he’s going to move forward like any normal child. I mean... it hasn’t affected his development or anything he’s doing or learning. He’s... perfectly... the same. Yeah, he’s going to be fine. Because his lip, it was only his lip and it wasn’t his palate.
As the child develops and grows further treatment may be offered such as an alveolar bone graft (to close the gap in the line of teeth in the upper jaw), lip revision, rhinoplasty (nose reshaping), and jaw alignment (orthognathic surgery) to adjust the way that the teeth meet and bite together. Treatment such as rhinoplasty and orthognathic surgery are offered in late teenage and early adult years when the face has stopped growing.
So just to summarise the treatment that he’s had so far: the initial lip repair and the palate, that was all within his first year of life?
Alison: Yes.
So what has he had subsequently?
Alison: Well we... he wasn’t due to have anything else. They said that they thought he may need a bone graft operation a few years ago because they didn’t know whether or not the bone had fully grown etc. So it was the case of, “We’ll just watch and we’ll wait.” And at that point he was still under his consultant in the [Hospital name].
And it wasn’t until last year, about Christmas time, we’d sort of, because they kept on saying, we only went every couple of years at that point for a check-up, and it was the case of, “No, I think he’ll be OK. I don’t think he’ll need this.” And obviously it was a long way to travel just for a ten minute, you know, “Yeah, think he’s fine, don’t need the operation.” So at that point we discussed it and we said, “Well we may as well transfer him to the consultant team up here.”
We’d heard that, you know, their team was, you know, really good. We were a bit reluctant because of obviously the treatment he’d had from the others was superb.
Chris: True yeah hmm.
Alison: So again it was just that leap of faith.
Chris: Yes isn’t it?
Alison: Yeah, we didn’t know anyone else.
Chris: If someone has done a good job you don’t want somebody else coming along and screwing it all up.
Alison: Yeah and that…
Chris: You know, so…
OK so if it ain’t broke don’t fix it, kind of thing?
Chris: [laughs] You know.
Alison: Yeah, yeah and it was only a, a visit every once in a while, wasn’t it?
Chris: Yeah, yeah.
Alison: But because of him being at high school, it was more time out of his school, so it was a case of well, for a quick check-up, we may as well just go to these guys. And obviously we thought the first appointment, I think it was about October last year, was just going to be a meet and greet and, “Yeah, see you in a, you know, three years or so.”
OK.
Alison: But [laughs]
OK yeah, I remember you explaining this in your email when you first contacted me?
Alison: Yeah, that’s right, we got told, “No actually he does need the bone graft operation.” And they would have done it when he was aged 8, between 8 to 10. So it was the case of, “We need to do this as soon as possible.” So from that point on it’s been a bit of a roller-coaster having his brace fitted so that they can make the space for her to actually do the work that she needs to do, which for him has been really difficult.
So he’s now in the care of an orthodontist, is it?
Alison: He has an orthodontist, yes, up here again at the hospital and he has obviously a new plastic surgeon now.
Yeah sure.
Alison: So we will... we’ve only met her once but... we are due to meet again beginning of April, which hopefully then we’ll find out a date for his operation.
I understand you’ve recently had some jaw orthognathic surgery, is that right?
Yeah I had upper jaw surgery about five weeks ago.
Could you explain the purpose of that, of the surgery?
Yeah previously my top jaw was set behind my bottom jaw and... I think that’s just what happens if you have a cleft. And kind of through brace work, it took a couple of years, and then just five weeks ago I had my top jaw moved forward just so it settled in well like... normally, as you would say, which means obviously my bite is now normal, so my jaw is in front, my top jaw is now in front of my bottom jaw. And also it’s given me quite a lot of more fullness in my face.
More fullness?
Yeah because before it was quite sunken really.
OK.
But it’s kind of... given it a lot more fullness, which is good.
Yeah thank you. So could you tell me how you were prepared for that operation, what kind of support were you given?
Yeah well it was kind of, it, it was something that had... that I... hmm it was something that had been on the cards for like years and I knew about it.
On the cards?
Yeah so I had known about it for quite a long time. But because it’s the kind... because it’s an operation where you need to wait until you’ve stopped growing I can... it was quite a long wait from finding out about it to then actually having it. So... obviously your cleft team explain it all to you and it’s obviously your choice, it’s not a necessary operation but like obviously beneficial. So it was just brace work for quite a long time and then ... kind of meeting with the team and it was any questions I had they were more than happy to answer them, and I felt like really comfortable to go to them with cleft issues that I had, even if it was something really small and might be insignificant, but it’s not... like they were more than happy to answer it. So... the support network before it was... preparation for it was really good.
Really good?
Yeah.
So you were pleased?
Yeah.
And did you feel able to ask, did you feel confident in asking questions?
Yeah I felt like I felt really confident in asking whether it was the surgeon or an orthodontist anything you like: they were happy to answer it for me.
It is also common for a child born with a cleft lip and/or palate to receive specialist dental care because they are more likely to have fewer teeth (hypodontia) or extra teeth (supernumerary) than children without a cleft. Children born with a cleft are also more likely to have a narrow top jaw, perhaps because of previous surgery, and the teeth that do grow may become crowded and crooked. (See ‘Dental and orthodontic treatment’).
Children born with a cleft palate may also develop glue ear due to a build-up of fluid in the inner ear and this can affect their hearing. Some children are fitted with grommets (ventilation tubes) in the ear to help drain excess fluid from the ear. Sometimes children with clefts are fitted with temporary hearing aids if their hearing is impaired.
There are also some rarer genetic conditions associated with having a cleft palate such as Stickler Syndrome, Pierre Robin Sequence (PRS) and Di George Syndrome (22q11 deletion syndrome) and these children will require additional care (see ‘Cleft and other conditions’).
I think when she was 2 or 3 we went up and saw them all again, and we go and see the specialist speech and language team from there as well. And then... I don’t know, now, she was seen by the speech and language, and we’re going for an appointment tomorrow in [place name] to see how her palate’s working, because they’re not... she has a lot of air come down her nose sometimes, and they’re not sure whether that’s a bad habit she’s got into.
OK yeah.
They think some of it probably is and some of it’s where it’s just escaping where it’s not quite closing properly at the back.
OK I understand yeah. So she’s just had the one op?
Yeah just one.
And so in terms of looking towards the future, is she expected to have any more surgery or?
For the palate it will depend on the results of this videofluoroscopy tomorrow, so they’ll see if it is air escaping because it’s not closing properly. And then it will be a decision whether it was something that needed an operation or something that I thought she could manage and just live with, and maybe when she was older she could make that decision. We’ve got Stickler syndrome, which is what has caused the PRS, and that... we need an operation on her eyes as well. So that will be something that she will need to have done.
I was just wondering about the other services which get involved in cleft?
Yeah.
Did she need any speech therapy?
She had speech therapy. It was quite difficult to get it locally; I’ve had a battle with them. She was referred from the cleft service speech and language, which we see once a year maybe, maybe six months, it depends how they find her speech. And she was referred about two years ago locally, and we only got seen at Christmas.
Right, so there’s a bit of a backlog?
Yeah and then when we did get seen they said, “Oh we’ve got a major pile-up, basically, and we’re just trying to get people off our books. So I think we’re just going to... let you go and refer you back to the cleft team.”
So even though she’s a PRS baby…
Yeah.
there’s no priority?
No, well I argued with them. I said because of the cleft as well she wears hearing aids.
Oh she is wearing them?
Yeah.
I was going to ask about that, yeah.
Yeah she has hearing aids because she has…
In both ears?
Yeah both, because, just because of fluid build-up.
Does she have grommets?
No. That was their... they suggested that hearing aids were probably best because the grommets come out. And when I looked into it I thought it’s another surgery to put her through. And I know somebody that had a child, not with a cleft, but they had grommets, and they’ve had three operations and they just keep falling out.
Yeah that’s quite common, isn’t it?
Yeah so I didn’t, I didn’t really want to keep putting her through that.
Yeah sure.
So she’s got the hearing aids. So I was obviously angered at this point that she has hearing aids, as well as the cleft palate, so it’s two different problems that are making it harder for her speech.
Yeah.
And by arguing with them I managed to get her seen once more to be assessed. And after that assessment they agreed that they would keep her on their books but sort of... part-time-ish, I guess. It’s not... they’ve given me some things to try at home. And then we went back and saw the cleft team July/August, and they said... they referred us to have this videofluoroscopy because of the air escaping, and said that, for her age, her speech is very good. The words that she can say like have been measured on par with like an 8 year old, the way certain things are said.
Oh really? Hmm.
And her vocabulary is very good. It is just this air, it’s like a snorting sound when she says things like fish, like the ‘sh’ comes out as a snort. But other than that, yeah, you wouldn’t... nobody could tell that she’d had a cleft palate just by talking to her or seeing her really. So it is quite... it’s good. You don’t... you don’t notice.
The ‘cleft treatment pathway’ is intended to be family focused and families can develop open and trusting relationships with members of the cleft team. The CNS will be the first point of contact and help co-ordinate the care of the child. A diagnosis of cleft is likely to be an overwhelming experience and there will be a lot of information to take in (see ‘Emotional impact and support’). When the child is born it may be challenging to understand the child’s needs and the treatment that is required. There are many individual factors about the child that will determine the best treatment and therapy for him or her.
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 we’re 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 he’s 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. He’s, you know, he’s three months old, he’s 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.
Well the only other one was , yeah, was just was CLAPA, but also just, yeah, groups on Facebook really and just getting in contact with, with parents. I mean my wife’s been more into that than myself.
OK.
Just yeah going on Facebook and sort of hooking up with other mums and... things like that. But that’s been pretty much her... her domain really.
Yeah so was this kind of a positive aspect of what you’ve been going through?
Yeah I think so. I mean and, and also hearing, obviously, my wife, we chat and stuff, and she relays what she’s learnt from other people, what they’re going through and stuff. And so it’s just, yeah, I would say it’s very positive. I mean I think that’s a big thing, I mean in society, where we should, when sort of people are going through things, actually you share with one another what’s going on, and encourage one another and say, “Look, hey you’re not in it by yourself, we’re going, we’re going through it as well.” And, and because you do think you’re very, oh you’re thinking, “Oh no, it’s only us, why has it happened to us?” all this kind of stuff. And you always have these questions.
Sure.
And it’s when you can say, “Look, it’s not just us, it’s, we, there’s another family there, there’s another family there,” and, and then you can chat to them and encourage them. And, as I say, my wife still contacts this little family who’ve had a little boy who had the cleft palate.
Yeah.
And it actually perhaps sparks up friendships as well which you wouldn’t necessarily have had. And just, yeah, just encouraging one another really, but yeah.
OK great. So is there any advice you would give to other families or health professionals at all, in the way people communicate about cleft lip and palate?
I would say... just, yeah, just be honest and about how you’re feeling. Because I think it’s the worst thing to kind of shut up your feelings and sort of think, “Oh it’s, it’s,” you know, saying it’s all OK and you’re fine with it. And ask questions as well when you’re seeing particular specialists and the cleft nurse team.
Children born with a cleft lip may have no problems or concerns psychologically, but parents may worry about how their child will develop and about difficulties they may face in the future. Parents may also want information about how to support their child through the ‘cleft treatment pathway’. Parents may be unsure what to tell other people (see ‘Telling other people’) or how to talk to their child about their cleft. Others are concerned about the possibility of teasing when their child starts school. Most of the U.K. regional Cleft Services have a psychologist who will attend the MDT meetings as part of the ‘cleft treatment pathway’.
Psychological support can help to develop attitudes, beliefs and behaviours that will empower the child and enable him or her to engage with others at school and develop social relationships. A psychologist can also provide support for parents if they need it as their child progresses through the ‘cleft treatment pathway’.
Children who are born with a cleft are monitored within the cleft service until the age of 21. However, even after this time there are still opportunities within the U.K. NHS for adults to receive continued care if they experience problems associated with the cleft. (See ‘Cleft treatment as an adult’).
Andy: I think there’s always assumptions made about, you know, just, you know, even what people class as being normal in society and all that kind of, you know, that kind of stuff as well. So you just... you kind of look at that and, like I said, it’s about giving your, your child every opportunity that they possibly can do in every piece of, you know, help, support, advice, whatever it is.
Diane: And I think our surgeon’s very good, isn’t he? Because he’s, he’s very much “If you’re not happy with it, you know, come back and there are things that we, we can do, if you’re not happy with the palate repair, if you’re not happy with the lip repair.” If he’s... you know, when he grows up, if he’s not happy with the, you know, the way his, his lip has, or his nose has formed, you know, there are things that the surgeon is happy to do.
So do you feel like you’re sharing the same agenda then?
Andy: Yeah, oh yeah, yeah.
Diane: Yeah he definitely wants, you know, the best for them, and doesn’t want... you know, wants the parent and the child to be happy, you know, happy with what he’s done.
Andy: I know someone, like my, my best friend basically, and she’s 18, I think it is, and she was the one with the cleft, and she’s had like, I think it’s like 12 like, you know, nose, you know, alterations and stuff like that because she hasn’t quite been happy with everything. But, you know, that to me, knowing that that’s available is, you know, in, but then it’s up to [son’s name] to make that kind of decision. So that in itself is, like I said, you know, we’re perfectly happy with everything.
Diane: The fact that they’re there until, I think they don’t get signed off until he’s about 20 so, you know, if he’s 18/19 and wants something changed then... he can speak to the surgeon.
Last reviewed June 2017.
Jenny was informed by the CNS about the treatment her daughter might need following her birth. It was helpful to have an early discussion about treatment that might be required in the future.
Jenny was informed by the CNS about the treatment her daughter might need following her birth. It was helpful to have an early discussion about treatment that might be required in the future.
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So did you meet the cleft specialist team?
Yeah we met them, I suppose, when she was about two months old. ... And so by that time it sort of felt like we kind of knew what we were dealing with. And then she was ... six and a half months when she had her surgery.
Which felt really worrying in the build-up to it, and then my niece got very, very ill with meningitis, and, and nearly died, you know, couldn’t have been worse. And that... that put Maisie things in perspective. And then they ended up both having surgery on the same day which, you know, is weird how that sort of thing can happen. But it, it just reminded us that... what we were dealing with in the grand scheme of things was really not very much…
Yeah.
…compared to what a lot of families have to cope with. So that was... yeah that was, that was really helpful for us in the build-up to the surgery and the aftermath. And the surgery at that stage, you know, went really well.
Becky and Mark’s son was born with a cleft lip and palate. The couple discuss how the cleft care pathway was explained to them and what specialists would be involved their son’s care.
Becky and Mark’s son was born with a cleft lip and palate. The couple discuss how the cleft care pathway was explained to them and what specialists would be involved their son’s care.
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Becky: Yeah it was, it was really clear cut in terms of, you know, he’ll need hearing checks, the speech and language sort of service will become involved, and to get him registered with a dentist. I think it was quite a clear pathway. And I think they... I think you know where you are basically in terms of when he’ll have checks like, you know, in terms of his speech, like they’re going to give at certain ages, or if there’s concerns like, you know, anything, and the next thing is the palate, and he’ll have babble therapy workshop. And, you know, and so it’s quite, quite clear of how…
Is that babble therapy?
Becky: Yeah that’s right.
For his pre - speech?
Becky: Yes, yeah so I think you know where you are in terms of that. And I think you know…
Mark: And we know, for example, he’s got the palate operation to come, and we know that’s going to be a lot harder than lip.
Yeah.
Mark: Well even though cosmetically the lip is obviously a concern, because it’s what you can see, the palate is the one which is more painful and…
Becky: Yeah.
Mark: …it’s going to take a little bit longer for him to recover from.
Becky: Yeah.
Mark: So we are aware of timescales of things as well, aren’t we?
Becky: Yeah, yeah and I think, you know, it’s something like 50% need speech therapy, 50% don’t, so you’ve got that, you know, to go with. You think, right OK, he may or he may not. But you know, in the wider team I think they were quite clear about who is involved and when they become involved really and if there’s, you know, sort of in speech and language.
Mark: What we found so helpful as well is we sat down together, didn’t we, before all these meetings, and we did, we wrote a load of questions down.
Becky: Yeah.
Mark: And we put everything down we were concerned, and we asked them, didn’t we?
Becky: Oh even basic questions, because I was just like sort of, “Well can it ever come apart?" like, you know, and that might be a simple thing.
Oh OK yeah.
Becky: But he was just like... no question is a stupid question. But it was just like, to me, OK if he knocks it, or what about if the nose and?
Mark: But he was good, wasn’t he?
Becky: Yeah.
Mark: He said, “Look, just fire away, give me it all,” didn’t he?
Becky: Yeah I think it was, yeah, just like an A4 sheet of anything that…
Mark: Yeah.
Becky: …you know, you wanted to know.
Kerry’s son was born with a cleft lip which was closed at 3 months. He is not likely to need any further medical attention until he is 8 or 9 years of age.
Kerry’s son was born with a cleft lip which was closed at 3 months. He is not likely to need any further medical attention until he is 8 or 9 years of age.
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I mean the repair, you just wouldn’t even know: it’s amazing what they can do.
And you had trust in the team?
Yeah, yeah I mean we were quite lucky because we ended up getting the head surgeon.
Oh OK.
So that made me feel great too. But I know that the whole team are amazing. I’ve seen all their work. You always see people, like the people that I’ve met, putting pictures up of their children after surgery, and you just think, “How the hell have they done that?”
Yeah.
It’s great, it’s brilliant.
OK so it sounds like it’s been pretty much a pretty positive experience for you and your family?
Once the surgery was done, yeah, [laughs] yeah.
Can you cast your mind back, you were talking about you met the whole team at one meeting, what was that like, what was that experience like?
You walk in and you see all these people, and obviously you worry because you think, “Why are all these people here?”
Yeah.
But... they’re there standardly. Like your child might not need... speech therapy, but they’re there just in case you need them. So it’s actually quite reassuring because you know that, no matter what the severity, your child will get the help they need.
Yeah sure.
So it’s fine. It’s just the shock of seeing so many people in there just for your child.
Yeah I can imagine.
Hmm, hmm.
And did you feel that you were able to ask the questions you wanted to ask, you know, did you feel confident to do that in that situation?
Hmm, hmm.
Yeah.
Yeah they were really friendly and helpful. And... any questions you had, even if you thought they were something really silly…
Yeah.
…they were, they were brilliant. And you always, you’re always able to contact... your cleft nurse if you have any questions or queries, and they’re very good, they’ll get back to you immediately.
OK great. And so were there any implications for your son, apart from the cosmetic surgery, were there any other implications for speech and language therapy or anything like that?
They believe that, because his palate wasn’t affected, that he shouldn’t need or require any speech therapy.
OK.
...He should be OK. It’s just going to be the notch in the gum now that needs to be repaired.
OK how old will he be when they do that?
Oh I’m told it’s between 9 and 12 years old.
OK so not for some time, yeah?
Hmm, hmm yeah it’s quite a while away, yeah.
So in terms of your son’s social development and interaction, how do you feel about that, what kind of expectations do you have about that?
Oh I think that he’s going to move forward like any normal child. I mean... it hasn’t affected his development or anything he’s doing or learning. He’s... perfectly... the same. Yeah, he’s going to be fine. Because his lip, it was only his lip and it wasn’t his palate.
Alison and Chris discovered that their son would need a bone graft when he was 15 when they met their new cleft team following a house move.
Alison and Chris discovered that their son would need a bone graft when he was 15 when they met their new cleft team following a house move.
Age at interview: 39
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Alison: Yes.
So what has he had subsequently?
Alison: Well we... he wasn’t due to have anything else. They said that they thought he may need a bone graft operation a few years ago because they didn’t know whether or not the bone had fully grown etc. So it was the case of, “We’ll just watch and we’ll wait.” And at that point he was still under his consultant in the [Hospital name].
And it wasn’t until last year, about Christmas time, we’d sort of, because they kept on saying, we only went every couple of years at that point for a check-up, and it was the case of, “No, I think he’ll be OK. I don’t think he’ll need this.” And obviously it was a long way to travel just for a ten minute, you know, “Yeah, think he’s fine, don’t need the operation.” So at that point we discussed it and we said, “Well we may as well transfer him to the consultant team up here.”
We’d heard that, you know, their team was, you know, really good. We were a bit reluctant because of obviously the treatment he’d had from the others was superb.
Chris: True yeah hmm.
Alison: So again it was just that leap of faith.
Chris: Yes isn’t it?
Alison: Yeah, we didn’t know anyone else.
Chris: If someone has done a good job you don’t want somebody else coming along and screwing it all up.
Alison: Yeah and that…
Chris: You know, so…
OK so if it ain’t broke don’t fix it, kind of thing?
Chris: [laughs] You know.
Alison: Yeah, yeah and it was only a, a visit every once in a while, wasn’t it?
Chris: Yeah, yeah.
Alison: But because of him being at high school, it was more time out of his school, so it was a case of well, for a quick check-up, we may as well just go to these guys. And obviously we thought the first appointment, I think it was about October last year, was just going to be a meet and greet and, “Yeah, see you in a, you know, three years or so.”
OK.
Alison: But [laughs]
OK yeah, I remember you explaining this in your email when you first contacted me?
Alison: Yeah, that’s right, we got told, “No actually he does need the bone graft operation.” And they would have done it when he was aged 8, between 8 to 10. So it was the case of, “We need to do this as soon as possible.” So from that point on it’s been a bit of a roller-coaster having his brace fitted so that they can make the space for her to actually do the work that she needs to do, which for him has been really difficult.
So he’s now in the care of an orthodontist, is it?
Alison: He has an orthodontist, yes, up here again at the hospital and he has obviously a new plastic surgeon now.
Yeah sure.
Alison: So we will... we’ve only met her once but... we are due to meet again beginning of April, which hopefully then we’ll find out a date for his operation.
Iona speaks about her recent orthognathic surgery conducted on her jaw.
Iona speaks about her recent orthognathic surgery conducted on her jaw.
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Yeah I had upper jaw surgery about five weeks ago.
Could you explain the purpose of that, of the surgery?
Yeah previously my top jaw was set behind my bottom jaw and... I think that’s just what happens if you have a cleft. And kind of through brace work, it took a couple of years, and then just five weeks ago I had my top jaw moved forward just so it settled in well like... normally, as you would say, which means obviously my bite is now normal, so my jaw is in front, my top jaw is now in front of my bottom jaw. And also it’s given me quite a lot of more fullness in my face.
More fullness?
Yeah because before it was quite sunken really.
OK.
But it’s kind of... given it a lot more fullness, which is good.
Yeah thank you. So could you tell me how you were prepared for that operation, what kind of support were you given?
Yeah well it was kind of, it, it was something that had... that I... hmm it was something that had been on the cards for like years and I knew about it.
On the cards?
Yeah so I had known about it for quite a long time. But because it’s the kind... because it’s an operation where you need to wait until you’ve stopped growing I can... it was quite a long wait from finding out about it to then actually having it. So... obviously your cleft team explain it all to you and it’s obviously your choice, it’s not a necessary operation but like obviously beneficial. So it was just brace work for quite a long time and then ... kind of meeting with the team and it was any questions I had they were more than happy to answer them, and I felt like really comfortable to go to them with cleft issues that I had, even if it was something really small and might be insignificant, but it’s not... like they were more than happy to answer it. So... the support network before it was... preparation for it was really good.
Really good?
Yeah.
So you were pleased?
Yeah.
And did you feel able to ask, did you feel confident in asking questions?
Yeah I felt like I felt really confident in asking whether it was the surgeon or an orthodontist anything you like: they were happy to answer it for me.
Children born with a cleft palate may also develop glue ear due to a build-up of fluid in the inner ear and this can affect their hearing. Some children are fitted with grommets (ventilation tubes) in the ear to help drain excess fluid from the ear. Sometimes children with clefts are fitted with temporary hearing aids if their hearing is impaired.
There are also some rarer genetic conditions associated with having a cleft palate such as Stickler Syndrome, Pierre Robin Sequence (PRS) and Di George Syndrome (22q11 deletion syndrome) and these children will require additional care (see ‘Cleft and other conditions’).
Della’s daughter was born with a cleft lip and palate which was closed with surgery but also had a genetic condition associated with cleft called Stickler syndrome.
Della’s daughter was born with a cleft lip and palate which was closed with surgery but also had a genetic condition associated with cleft called Stickler syndrome.
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OK yeah.
They think some of it probably is and some of it’s where it’s just escaping where it’s not quite closing properly at the back.
OK I understand yeah. So she’s just had the one op?
Yeah just one.
And so in terms of looking towards the future, is she expected to have any more surgery or?
For the palate it will depend on the results of this videofluoroscopy tomorrow, so they’ll see if it is air escaping because it’s not closing properly. And then it will be a decision whether it was something that needed an operation or something that I thought she could manage and just live with, and maybe when she was older she could make that decision. We’ve got Stickler syndrome, which is what has caused the PRS, and that... we need an operation on her eyes as well. So that will be something that she will need to have done.
I was just wondering about the other services which get involved in cleft?
Yeah.
Did she need any speech therapy?
She had speech therapy. It was quite difficult to get it locally; I’ve had a battle with them. She was referred from the cleft service speech and language, which we see once a year maybe, maybe six months, it depends how they find her speech. And she was referred about two years ago locally, and we only got seen at Christmas.
Right, so there’s a bit of a backlog?
Yeah and then when we did get seen they said, “Oh we’ve got a major pile-up, basically, and we’re just trying to get people off our books. So I think we’re just going to... let you go and refer you back to the cleft team.”
So even though she’s a PRS baby…
Yeah.
there’s no priority?
No, well I argued with them. I said because of the cleft as well she wears hearing aids.
Oh she is wearing them?
Yeah.
I was going to ask about that, yeah.
Yeah she has hearing aids because she has…
In both ears?
Yeah both, because, just because of fluid build-up.
Does she have grommets?
No. That was their... they suggested that hearing aids were probably best because the grommets come out. And when I looked into it I thought it’s another surgery to put her through. And I know somebody that had a child, not with a cleft, but they had grommets, and they’ve had three operations and they just keep falling out.
Yeah that’s quite common, isn’t it?
Yeah so I didn’t, I didn’t really want to keep putting her through that.
Yeah sure.
So she’s got the hearing aids. So I was obviously angered at this point that she has hearing aids, as well as the cleft palate, so it’s two different problems that are making it harder for her speech.
Yeah.
And by arguing with them I managed to get her seen once more to be assessed. And after that assessment they agreed that they would keep her on their books but sort of... part-time-ish, I guess. It’s not... they’ve given me some things to try at home. And then we went back and saw the cleft team July/August, and they said... they referred us to have this videofluoroscopy because of the air escaping, and said that, for her age, her speech is very good. The words that she can say like have been measured on par with like an 8 year old, the way certain things are said.
Oh really? Hmm.
And her vocabulary is very good. It is just this air, it’s like a snorting sound when she says things like fish, like the ‘sh’ comes out as a snort. But other than that, yeah, you wouldn’t... nobody could tell that she’d had a cleft palate just by talking to her or seeing her really. So it is quite... it’s good. You don’t... you don’t notice.
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.
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
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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 we’re 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 he’s 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. He’s, you know, he’s three months old, he’s 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.
Matt’s daughter was born with a cleft palate and being able to share experiences with other people through direct contact and social media made things easier for the family.
Matt’s daughter was born with a cleft palate and being able to share experiences with other people through direct contact and social media made things easier for the family.
Sex: Male
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OK.
Just yeah going on Facebook and sort of hooking up with other mums and... things like that. But that’s been pretty much her... her domain really.
Yeah so was this kind of a positive aspect of what you’ve been going through?
Yeah I think so. I mean and, and also hearing, obviously, my wife, we chat and stuff, and she relays what she’s learnt from other people, what they’re going through and stuff. And so it’s just, yeah, I would say it’s very positive. I mean I think that’s a big thing, I mean in society, where we should, when sort of people are going through things, actually you share with one another what’s going on, and encourage one another and say, “Look, hey you’re not in it by yourself, we’re going, we’re going through it as well.” And, and because you do think you’re very, oh you’re thinking, “Oh no, it’s only us, why has it happened to us?” all this kind of stuff. And you always have these questions.
Sure.
And it’s when you can say, “Look, it’s not just us, it’s, we, there’s another family there, there’s another family there,” and, and then you can chat to them and encourage them. And, as I say, my wife still contacts this little family who’ve had a little boy who had the cleft palate.
Yeah.
And it actually perhaps sparks up friendships as well which you wouldn’t necessarily have had. And just, yeah, just encouraging one another really, but yeah.
OK great. So is there any advice you would give to other families or health professionals at all, in the way people communicate about cleft lip and palate?
I would say... just, yeah, just be honest and about how you’re feeling. Because I think it’s the worst thing to kind of shut up your feelings and sort of think, “Oh it’s, it’s,” you know, saying it’s all OK and you’re fine with it. And ask questions as well when you’re seeing particular specialists and the cleft nurse team.
Psychological support can help to develop attitudes, beliefs and behaviours that will empower the child and enable him or her to engage with others at school and develop social relationships. A psychologist can also provide support for parents if they need it as their child progresses through the ‘cleft treatment pathway’.
Children who are born with a cleft are monitored within the cleft service until the age of 21. However, even after this time there are still opportunities within the U.K. NHS for adults to receive continued care if they experience problems associated with the cleft. (See ‘Cleft treatment as an adult’).
Andy and Diane explain how they share the same ideas about the treatment their son has undergone for his lip and palate and the availability of future treatment taking him up to an adult.
Andy and Diane explain how they share the same ideas about the treatment their son has undergone for his lip and palate and the availability of future treatment taking him up to an adult.
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Diane: And I think our surgeon’s very good, isn’t he? Because he’s, he’s very much “If you’re not happy with it, you know, come back and there are things that we, we can do, if you’re not happy with the palate repair, if you’re not happy with the lip repair.” If he’s... you know, when he grows up, if he’s not happy with the, you know, the way his, his lip has, or his nose has formed, you know, there are things that the surgeon is happy to do.
So do you feel like you’re sharing the same agenda then?
Andy: Yeah, oh yeah, yeah.
Diane: Yeah he definitely wants, you know, the best for them, and doesn’t want... you know, wants the parent and the child to be happy, you know, happy with what he’s done.
Andy: I know someone, like my, my best friend basically, and she’s 18, I think it is, and she was the one with the cleft, and she’s had like, I think it’s like 12 like, you know, nose, you know, alterations and stuff like that because she hasn’t quite been happy with everything. But, you know, that to me, knowing that that’s available is, you know, in, but then it’s up to [son’s name] to make that kind of decision. So that in itself is, like I said, you know, we’re perfectly happy with everything.
Diane: The fact that they’re there until, I think they don’t get signed off until he’s about 20 so, you know, if he’s 18/19 and wants something changed then... he can speak to the surgeon.
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