I mean I’m a very hands-on dad, so I mean I get straight in there and doing stuff. I mean from the off when we came away from hospital wed been given these special bottles, but obviously she still had a tube in her nose. And so what would happen is they… would allow an hour for feeding, which is what you’d allow for any other baby as well who didn’t have a cleft palate. But they didn’t feed in the bottle, you’d just give a little bit in the bottle and be squeezing it in, because they can’t do that suction motion. And then you’d finish off with a with the tube. But yeah I mean she was… as I say, yeah, I mean we, we both got stuck in with that. I mean it was quite troublesome because every three hours you’d be sort of religiously doing this for, for well I mean ever since she was born. So I mean it’s been like, if you go out somewhere you’re thinking, Oh weve got to make sure were, were ready, weve got to be, because we know sort of feeding takes a long time, and all this stuff. But yeah weve just learned to kind of just add it into the routine and think, Well OK. We know if we go on holiday or something, or a long journey, we think, OK well well have to picture in this time, one o’clock or whatever, were going to stop for an hour and

My wifes found it very helpful on the likes of Facebook where theres certain forums and groups set up, where you can get in contact with other parents, other mothers who are also struggling, in a sense, with… their children being, in a sense, different with having a cleft palate, and just some, some, some of the complications that can happen with that. And I know shes certainly got in contact with another little boy who was having his operation on the same day, and shes kept in contact with her through Facebook and, and stuff. And so it’s been sort of an eye-opener to us, to realise that actually through what weve gone through as parents, to really just encourage other parents who, who have got children in, in similar circumstances, just to, just to, yeah, to say, Look, hey it’s, it’s not the end of the world your child’s got a cleft palate, but theres tremendous support out there for you and just, just hang in there and, and just support one another, and know theres other parents out there who have got kids that are going through the same stuff as you. So… get in contact with them through Facebook, through CLAPA and other people, and meet up with other people and, and talk about it. And I think, to me as well, talking about it with people, even, even doing this interview now, has actually, sort of makes you process it.

So what do you understand about the treatment pathway? Because obviously I think there will be quite a few other services

Yeah.

which will kick in. I think you mentioned the orthodontist

Yeah well obviously

and

weve had initially the well she, yeah, at nine months she had her the actual operation

Yeah.

to fix the, the cleft palate, to restore that. And yeah were totally aware that were actually going to be under [hospital name] until shes 21. So that would incorporate as you said, your orthodontist because very much aware that her teeth will be fairly kind of mangled and growing in all different positions. I remember actually when we were in hospital there was a little girl in the bed next door, and she was about 10 or 11, and I know she had lots of trouble with her teeth. She, shed come in for, I think it was a second or third operation, trying to just sort out her teeth, because they were in quite a, quite a bad way. And we understand that that’s what happens. And also there was a speech therapist. They, they’re, even from now they’re sort of saying, Look, you need to try and encourage her, even at eight or nine months, this is quite bizarre because you think they’d make all kinds of noises, but try and encourage them to make kind of mum, mum, mum noises so that shes using the cleft palate, and making sure it’s there and it’s been restored to how it should be.

OK.

And so, yes, weve had speech so far. And also, as I said, my wife said that when she was there on the Monday, Monday just past, they had sort of psychologists there and various other people. So, as I say, theres a whole team of people which we will probably be under, as I say, until shes 21.

OK.

So yeah.

So what’s your view on the more cosmetic or aesthetic side of your daughter’s cleft palate?

In terms of just kind of what it would look like or?

Well yeah the way she will… obviously shes only nine months old, so it’s difficult to say.

Oh yeah, yeah, yeah.

But if her speech was affected, for example.

I think we give [daughter’s name] as much support in that. And I mean I.. to be honest, I mean, yeah, I mean as any parent would say, you love your child and you, yeah, and you’d do anything for them. And so I mean as much support we could help her. I mean obviously for speech needs, needs help and stuff, well contact the speech guys and well be able to help her as much as we can with that. But if theres still issues there with her speech, is not good and it can’t be, in a sense, improved in any way then that’s the way it is and well just go on with that. But, yeah, I mean it, and there will obviously be other issues with us as well along the way, because well be thinking, Oh wow, it’s quite hard. But, but, as I say, well just, well just keep going through the things and help and support her the best way we can as parents and get the best support that she can have through the NHS and other ways as well.

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 wifes 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 shes 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, were going, were 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, theres another family there, theres 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.