But the only other help hes really had is speech and language therapy, and we have regular hearing tests. And then we met with the surgeon, again for him to assess [son’s name].

So in terms of his hearing, is that affected at all?

We… the first few times, because we were having them every three months at one point, the first few times they were concerned that he might have glue ear, however, the last time we went they came to the conclusion that he didn’t have it at all and that actually he doesn’t need grommets or anything, which is good. Because we were worried about him having another operation, mainly on the basis that hes older now so hes going to be more aware of it.

Yeah sure.

So, yeah, were just kind of… were kind of, weve hit a plateau at the moment until we have the next operation, which is probably when hes about 8 or 9.

OK and would that be another repair of the palate?

It’s the bone graft for his gum.

No weve been really lucky. He there are some things that he can’t pronounce properly, but I think that’s just normal really for his age.

Yeah.

The speech and language therapist seems to be very happy with him. The last time we saw her I think was about a year ago. Were due a session with her in January.

OK great.

So that’s how happy she is with what’s happening. I think because he was the only child, and I think because he was the only grandchild as well, people would talk to him a lot.

So there was a lot of interaction.

Yeah and he… he was making the right noises fairly quickly. And obviously there were things that we needed to look out for, like my dad taught him how to growl, and then when we went to go and see the speech and language therapist she said, Don’t do that with him, [laughs] so, you know, had we have known we wouldn’t even have started it. However, it wasn’t an issue because he hadn’t been doing it for very long, and we just stopped doing it and then he stopped doing it. But, so it may have been a bit helpful to have known beforehand what things to do or not to do with him, but luckily for us it didn’t… really affect him.

But I think it’s just we were aware that he might have speech issues so we really… tried to help him with that and do what we could. Having now had a second baby [laughs] had he have been the second baby, I’m not sure we would have had as much time to be able to do that. So you know, we were just lucky that it was our first and we could spend the time that we needed to with him.

We had, yeah, they, they started testing her hearing when she was about nine months old. So that was kind of the routine screening that they do for cleft palate babies. And at that stage she had mild to moderate hearing loss. And then they tested her hearing every sort of three or so months. And for the first three or four hearing tests she consistently had kind of mild to moderate hearing loss, so it looked like we were going down the grommets route.

Yeah.

And then her hearing seemed to… get better, and shes mostly managed to maintain that. There have been kind of… some blips here and there, but so… between ENT and audiology they’ve kind of… they’ve kept quite a close eye on it. and then we used to go and see the ENT doctors about every four months, and then one would say, She needs grommets, and then wed say, Well do you know what, were really not… convinced, because her latest hearing test would… would seem OK. And then the next doctor would say, Actually I think shes alright. We can just… kind of just keep monitoring it for a while. And now it seems that… and my objection to grommets was just kind of more surgery.

Yeah.

And sort of I would rather have gone for hearing… hearing aids

Yeah and they’re quite controversial, aren’t they, grommets?

Yeah.

About how effective they are.

Yeah I mean obviously I don’t want her having… more, you know, surgery that she doesn’t… yeah I don’t want her having surgery if there is another option. They fall out. And glue ear can be a really persistent… problem for cleft palate babies, and you don’t want to kind of keep doing grommets. And I thought, you know, because this was when she, this was like a couple of years ago, so I was thinking, Well shes not going to be kind of stigmatised by wearing hearing aids at that age. And in a way it’s a bit of a test: if we see a massive difference then it might make us feel more like… Actually she really needs grommets.

But by the time we kind of, so we were kind of grappling with all of that and then it’s just sort of happened that she… her hearing has improved and weve not needed it.

OK hmm.

But we had… quite a bit of frustration with ENT doctors who didn’t seem to join up the E and the T in ENT. But they’d be saying, Well, you know, you’ve said that her speech is delayed, and that must be because she can’t hear properly. And I’m saying, But shes got a cleft palate. That means that the roof of her mouth wasn’t made properly.

Is it the hard palate or the soft palate, do you know?

It’s not clear actually from the correspondence weve had.

OK, OK.

Some of it… possibly it was just the soft palate. Theres kind of, theres been different things written at different times so, yeah, I don’t know….But yeah, so the ENT doctor would be putting all of her speech problems down to the glue ear and not seeming to take into account… the palate….So we kind of… yeah we had quite a few appointments with different… because it was all sort of quite junior doctors, you know, wed see a different one at each appointment.

Right.

And some of them really seemed to get it and seemed to understand, and some of them just… just seemed to want to put grommets in for… no clear reason, which was quite frustrating.

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.

Yeah hes had… he had grommets, hes had what’s called a Furlow operation on the soft palate, I think, is that, I think they call it a Furlow. And hes had his bone graft to repair the gap in the gum.

OK, sorry, I hadn’t heard of the Furlow before.

Yeah that was to help his speech.

OK yeah.

Because he was quite nasal.

Right yeah.

and it helps, you know, to be able to use the muscle a bit better to control the air escaping back down the nose.

Does he still have help with speech?

He doesn’t. I’m hugely fortunate really, we are with him, and he is himself, because his speech is really good.

OK that sounds really positive.

Absolutely, definitely, definitely. I mean we were offered all the speech and language that was necessary.

Yeah.

And when they thought he would benefit from this Furlow operation, we went and had this moving x-ray done. You know, the surgeon could tell then, I guess, whether the operation would be of benefit or not, decided it was, had the operation, I think he was about 4, he was just about to go to school.

Yeah, yeah.

And it wasn’t immediate that you could tell the difference, but within sort of a couple of months he wasn’t sounding so nasal.

OK that’s interesting.

And he occasionally will sound nasal now when he gets tired and he whines and whinges a bit, because then hes, I’m told, I didn’t appreciate but, you know, hes being lazy then and not using the muscle to close it or whatever. And it’s not bad, but you think, you know, and I’ll say it to him now because hes 13, I’ll say, tell him that, you know, You’re sounding nasal, you’re whining, [laughs] you’re not sounding good. But other than that, I mean his speech is, is absolutely…spot on really.

Becky: I just… well theres no now actual concerns at the moment. I think it’ll be interesting sort of when he has the… you know, because the lip is cosmetic, but in terms of speech, you know, development etc., you know, that’ll be quite interesting now to see as time goes on you know, how, how that sort of, you know, develops really. But I mean hes just like any other seven month old isn’t he?

Mark: Yeah and whatever comes across now we can overcome, we know it’s not an issue now.

Becky: Yeah I just don’t think it’s… you know, anything major, you know, if there are speech problems, you know, they’re things that can be, you know can be sorted really, you know.

Yeah.

Becky: And I just think, you know, theres nothing major so far, is there, at all?

Mark: No.

Becky: You know, in terms of

Mark: The main concerns we had firstly was the cosmetic with the lip, because that is something which is always seen.

Becky: Hmm.

Mark: And obviously if there were any other problems, wasn’t it?

Becky: Yeah.

Mark: But now weve gone through that initial stage, we feel more settled don’t we?

Becky: Yeah I think, you know, were hoping he

Mark: We feel more that, look, whatever comes now we can overcome. And if it is speech therapy, well we can go through that.

Becky: Yeah.

Mark: Theres no issue with that.

Becky: You know, and

Mark: Our other son will talk for him for a bit [laughs].

Becky: [laughs] Yeah definitely. Yeah and I just think, you know, the further operation with the gum, you know, we just, it’s just something, OK, you know, well deal with.

Mark: We didn’t want but

Becky: Well deal with it at the time. Because I think sometimes you can just take one thing at a time, and yeah.

Hmm, hmm so speech therapy I had I think definitely when I started school, if not before.

Yeah, yeah.

And I used to go to a group

Hmm.

Thing, which I used to hate. And I went with a friend of mine who has got a cleft palate, and I just found it really frustrating that we were all sitting there and going round in a circle, hes saying this sound, you’re saying this sound and, do you know what I mean, it was really intimidating.

Hmm.

And then… I don’t know whether they picked up on that or whether the system changed, but someone came to my house and I had a one to one.

OK hmm.

And…yeah, that went on for a number of years, probably ten years I would say. And that was a really good relationship that I felt often it was someone that I felt comfortable with and trusted.

With one therapist?

Yeah, so it was good.

OK thanks. And would you say you benefited from the speech therapy?

Yeah I mean… like I do have to put the effort in to make sure I’m being clear for people and, you know, even now theres still times when people say, Well like I didn’t get that, and, you know, that’s just part of it. You have to be gracious for that to happen….But I’m quite happy, I would say, and confident in the way that I speak.

But, yeah, really beneficial I think to have.

And what kind of help have you had with your speech over the years?

I have had… when I was younger speech and language therapy quite a lot actually. Kind of as I got older I have, I have speech assessments every now and again. But in terms of… treatment-wise they’re not always keen, it wasn’t seen, they weren’t keen to do speech and language therapy and speech assessment. But it’s something that I’ll be looking into again in the next year or so; I’ll probably readdress the issue yeah.

Yeah, yeah I had been told that by moving the top jaw forward it would give more of a better proportion of my jaws in terms of facial appearance. So facial appearance would become more proportionate and just the fullness in my… my face would improve, like improve. I was told that speech could be… speech could go either way: it could be improved or it could have a negative effect.

Really hmm?

I’ve had a bit of both [laughs]. I’m a lot less nasally than I was previously.

Yeah.

But the strength to my voice.

Less nasally now but?

Yeah uhuh but the strength of my voice, sometimes I struggle to kind of pronounce like certain sounds. But again that’ll just… that’s something else later down the line that can be fixed.

OK so that’s a longer term

Yeah.

outcome?

Yeah.

Once you, because you said you’re going to re-engage with speech therapy?

Yeah, yeah and so it’ll maybe be another… so speech and language therapy, perhaps another operation later down the line, I’m not sure, but it can be addressed, so that’s fine.

So you’re confident?

Yeah, yeah I’m not too worried about it.

Sorry?

I’m not worrying about it, so its fine.