Kendal and Suzi – Cleft lip and palate

Kendal was born with a cleft of the soft palate. Her mother Suzi noticed that something was wrong with Kendal immediately following her birth by caesarean section. Kendal’s cleft palate was repaired when she was 4 months old but she was left with impaired hearing.

Kendal was born with a cleft of the soft palate. Her mother Suzi noticed that something was wrong with Kendal immediately following her birth by caesarean section. Suzi noticed that her daughter’s uvula was split in half. Suzi alerted a nurse and soon medics arrived at the ward to take a look. However, at this stage Suzi was given conflicting information about the seriousness of the condition. One consultant told her it would heal while another told her that Kendal would need an operation.

When Suzi tried to breastfeed her daughter she noticed that milk would then drip down her nose, which was a sign that Kendal had a cleft in her palate. There was nobody on the ward that could advise Suzie on how to feed her baby or why she was finding it difficult. When the family were at home a midwife visited and were then told that Suzi and her husband had to feed their new baby with special squeezy bottles. Suzi was also put in touch with a local CLAPA group and she befriended other women with cleft babies. However none of the other mothers had a child with the same cleft type as Kendal so they could not directly share their experiences.

Kendal’s cleft palate was repaired when she was 4 months old. Suzi and her husband were told that the operation was due to take over 2 hours and it was at this point that Suzi became aware of the seriousness of the operation and what it would entail. Following her cleft repair Kendal needed to have grommets inserted into her ears as she was prone to glue ear due to an overproduction of mucous. It was also discovered that Kendal had impaired hearing and hence Kendal has worn hearing aids since she was an infant. Kendal also received speech therapy, and Suzi’s background as a drama teacher also helped to promote Kendal’s speech. Together this intervention has assisted Kendal in engaging fully in life and subsequently she has achieved exceptionally well educationally, and is pursuing a career as an art teacher. Kendal also enjoys swimming, playing guitar and listening to rock music.

Kendal was born with a cleft palate and is currently training to be a teacher. Although she wears hearing aids she used to play rugby and currently enjoys playing guitar and swimming.

Age at interview 24

Gender Female

Kendal: I used to play rugby actually.

Did you? Yeah.

Kendal: Yeah and I

Suzi: Did England trials.

Kendal: Yeah I got to quite a good level and then I got a lovely injury. Yeah I used to take my hearing aids out for that because obviously I was I was in the front row, so part of the battering ram of course. Yeah so obviously if I bashed my hearing aids it’s not…

Not pleasant.

Kendal: Not really pleasant, because they would hurt. And I didn’t really want to damage them because, OK, they don’t cost me money but they cost [laughs] someone money. But, no, I used to, I used to do that.

Yeah.

Kendal: And I mean I… I think I spoke before, I… my tubes are a lot smaller and sort of I do… I’m probably not as fit as I should be, but well I know most people when they run or when I get out of breath, I do have to breathe mainly through my throat, because my nose is mainly blocked or… I can’t get enough oxygen through there, so I get a very heavy chest, and that’s quite painful. But that’s only, that’s one sort of drawback. But I do love to swim, as my mum has mentioned. But earplugs are better, because I do spend quite a lot of time under water.

Suzi: And your squishy nose.

Do you have any musical interests at all?

Kendal: Yeah I mean I try and play guitar.

Yeah.

Kendal: I… that is interesting, because in my hearing register I can’t hear bass notes as well.

Hmm yeah.

Kendal: So sometimes when I’m trying to emulate a song I won’t get it completely right. But just practise makes perfect really, as everything. But I love music; definitely into music. Love my rock music. I go to gigs and all that kind of stuff.

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Suzi and Kendal discuss how Kendal’s hearing problem was treated with grommets.

Age at interview 24

Gender Female

Kendal: And have they ever linked my cleft palate with my hearing? Because I do know it is common

Suzi: Yes, yes.

Kendal: for people with cleft lip and palate to be

Suzi: Theres, theres a definite link, theres a definite link.

Yeah.

Suzi: And the, and the operation that you had to, to cure or to put right your cleft added to your hearing problem.

Kendal: Hmm.

Suzi: Because you, you had glue ear, because remember you had grommets, do you remember?

Kendal: Yeah, they fell out.

Suzi: I didn’t want grommets. I couldn’t understand… why.

OK can you explain a bit more about the grommets?

Suzi: Yes.

Yeah thanks.

Suzi: There are… different… types of grommets. And grommets are basically they usually fit grommets, I don’t know whether it’s popular anymore, it tends to go in and out of fashion, grommets.

Well they’re still widely used.

Suzi: Are they?

Yeah, yeah.

Suzi: Well they, they actually put, it’s like putting… Kendal was… produced a lot of mucous.

Kendal: Hmm.

Yeah.

Suzi: And whether that was… because of her palate or not, I don’t know.

Suzi: The operation she had foreshortened her Eustachian tube, which is the little tube which links together, which meant that because she produced sort of gluey, thick mucous, and she only had little bits of tubes for it to clear through, she was forever having ear infections and throat infections and, and whatever. Even when… you know, I used to have in my fridge door the powdered antibiotic stuff so I could make up antibiotics.

Oh really? Hmm.

Suzi: Because she used to, and she used to, what used to happen as well, her eardrum used to perforate.

OK yeah.

Suzi: And she used to have… sort of shed wake up screaming and have sort of

Yeah, was that quite painful?

Suzi: Oh… well I don’t know: it’s never happened to me.

Kendal: Yes it is very painful. I haven’t had one probably since I was… I want to say… maybe 15; I think the last one I had was when I was 15.

OK yeah.

Kendal: I haven’t had one yet, touch wood. Actually my ears generally… have been quite good. But you were saying about grommets.

Suzi: Yes, yeah I mean she had grommets. Do you know, I can’t remember how old she was when she had grommets. I remember fighting against it.

Are grommets visible from the outside?

Suzi: No, no, no, no.

Or are they deep in?

Suzi: Yeah deep inside the ear. And basically they put a little… it’s a little plastic tube, like a little tiny, tiny, tiny straw.

So it helps to dissipate the mucous, I believe?

Suzi: Yes it’s meant to, it’s meant to sort of act as a sort of drain.

Kendal: Hmm.

Yeah, drain it off.

Kendal: Just drains mucous really

Suzi: Yeah only with Kendal what happened is that she had the grommets put in and she carried on producing the mucous.

Is that a surgical procedure?

Suzi: Yes.

OK yeah.

Suzi: Yes it’s a day.

Oh is it?

Suzi: Yeah it’s a day. You go in, you have the pre-clerking is…is more…traumatic. May- I don’t know, maybe I say it’s more traumatic than the operation because I’d already had a three month old baby… with a… big operation: that was traumatic. The grommets wasn’t. It was… I, because I’d already had a baby… that had had general anaesthetic.

Yeah.

Suzi: and that was horrible, that was horrible.

Kendal: I don’t remember it being a big operation though.

Suzi: Well grommets isn’t, no.

Kendal: No, it was just a…

Suzi: No. And within, within a couple of days the, the glue had formed again in her ears and glued, glued.

Kendal: Well it forced them out.

Suzi: Yeah it glued right through the hole and both her grommets popped out.

Kendal: Just popped out.

Suzi: I was lucky enough to find them.

Kendal: I think they did it twice, didn’t they?

Suzi: Yes.

Kendal: And then they went, No, kind of thing.

Suzi: Well no, no I said, No, no, no, no. Yes it was, I didn’t, it made no difference at all. And it was, then it was very fashionable, and it was like it was going to cure.

Yeah, yeah.

Kendal: But no, it’s just my hearing problem was more than just glue ear.

Suzi: They were still talking in terms of… her needing surgery in her ears.

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Suzi recalls how her daughter Kendal was fitted with hearing aids as a child. Kendal continues to wear hearing aids as an adult.

Age at interview 24

Gender Female

Kendal: Well I don’t know, I think I had the perspective that I couldn’t hear very well, I’ve got something in my ear that makes me hear very well, probably had a, well I’m giving myself a lot of [laughs] intelligence there, but I… this thing in my ear is helping me to hear. And I like, I like sounds. You know, I like… I like being able to hear, funnily enough [laughs].

OK so that was a positive reinforcement in itself, the fact that you?

Kendal: Hmm I can hear so

It gave you access to sound and communication?

Kendal: Yeah I mean even when I get a… well I recently had a hearing check-up, and even when they tweaked them a little bit I thought, Ooh, ooh that’s a new sound I haven’t heard before. So really simple things, Ooh, I got in the car and said, ooh yeah, that’s what a car engine sounds like.

Yeah.

Kendal: You know, so simple things you just go, Oh. I kind of… they’re there to help me, and I’ve always, I think because you’ve had such a positive attitude with it, well people wear glasses, yeah OK you get, you know, when you’re a kid you can be, you know, specky four-eyes or something like that, and… I mean I do wear glasses, I’ve got contacts in at the moment, but… there shouldn’t be a stigma with glasses, well there isn’t really a stigma with glasses, in fact they’re quite cool now, but with hearing aids I thin… they, I, they were always the thing that old people wore.

Suzi: Hmm.

Kendal: And I think you did a very good job of sort of… That’s just you, Kendal that’s fine. And I was just like, Oh yeah OK, I’ve got hearing aids. And I do remember kids coming up to me and going, What’s that in your ear? It’s a hearing aid. I was, I wasn’t very, I wasn’t fazed by people…

Suzi: I can remember you

Kendal: almost trying

Suzi: Yeah, I can remember you in show and tell’ at school

Kendal: Yeah.

Suzi: when you had the moulds.

Kendal: I used to bring in the moulds to show kids, This is? what my ear looks like, with the mould.

Suzi: Yeah.

Kendal: I used to be quite excited about it. And… I think because I was quite open about it, it kind of… then puts it on show and then people can’t really… question it, or they just accept that’s you, that’s a part of you. It’s like, Oh right, yeah, shes deaf.

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Kendal’s mother Suzi wanted to know the cause of her daughter’s cleft but was too busy looking after Kendal to worry about the cause.

Age at interview 24

Gender Female

Do you have any ideas about the cause of the cleft palate?

Suzi: No, none at all. I asked and asked and asked and asked and asked, you know, because that’s the first thing that you think if you have a baby that isn’t perfect: Is it my fault? What did I do wrong?

Kendal: Well, yeah, is it genetic?

And did you go through that process, was there any?

Suzi: I tried. I got nothing. Don’t know.

OK and did it cause you any distress or anguish?

Suzi: At the time?

Not knowing?

Suzi: No, not really. I was too busy getting on with dealing with, you know, how we were going to… get over any problems that she may have.

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