Matt

Brief Outline:

Matt’s youngest daughter was born with a cleft palate, it was detected by a midwife who was concerned that she was not feeding well. Matt’s daughter has undergone surgery to repair the palate, however she may also require orthodontic treatment and speech therapy in the future.

Background:

Matt is White British, married and works for a Christian charity. He has 2 daughters – his eldest is 2 years of age and his youngest is 9 months who was born with a cleft palate.

More about me...

Matt is White British, married, works for a Christian charity and is the team leader at a Christian centre. His youngest daughter was born with a cleft palate. Matt and his wife first found out about their daughters’ cleft palate about 6 hours after her birth when a midwife conducted a routine test because she wasn’t breastfeeding and was unsettled. 

The midwife on duty did not have much experience of cleft and was not able to feed Matt’s daughter with a special bottle at all. Matt’s daughter was then taken into the Special Care Baby Unit to be tube fed and was left to go to sleep on her own. Because she was born on a Friday night Matt’s wife did not get to see a specialist nurse until the Monday morning and the midwife then explained that his wife would be able to feed her baby with a squeezy bottle. 

Matt and his wife were unaware of the implications of having a child born with a cleft palate. The couple were also not sure of the cause of their daughters’ cleft although genetic tests were conducted and there is no family history of cleft on either side. Matt and his wife have had a lot of support from friends and family and have been open about telling people. They have also received support from CLAPA saying that it is helpful to meet and speak to other families who have gone through the same thing. Matt has also found that their participation in a Christian community has offered comfort and reassurance during a difficult time for the couple.

Matt’s daughter has now undergone an operation to repair the cleft palate. Prior to the operation the couple had regular meetings with the cleft service team and the surgeon. They felt at ease to ask the team and surgeon questions and trusted them with the care of their daughter. She had a general anaesthetic but when she fell asleep it wasn’t a big shock. They were kept informed throughout the operation and the surgeon spoke to them immediately afterwards. Matt and his wife also met with members of the multi-disciplinary team such as the orthodontist and speech therapist as their daughter may also require additional dentistry and help with speech development in the future. 

Matt is very grateful to the medical experts caring for his daughter and continues to put his Trust in the NHS. He also has faith that God will look after his daughters’ future development.

Matt was a ‘hands on’ dad and pleased to be able to contribute to feeding his new daughter as it could be a time consuming experience for all the family.

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 we’d 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 we’ve got to make sure we’re, we’re ready, we’ve got to be,” because we know sort of feeding takes a long time, and all this stuff. But yeah we’ve 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 we’ll have to picture in this time, one o’clock or whatever, we’re going to stop for an hour and…”

Matthew and Rhiannon found that talking with other parents they met through CLAPA and Facebook to be a positive and supportive experience.

My wife’s found it very helpful on the likes of Facebook where there’s 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 she’s certainly got in contact with another little boy who was having his operation on the same day, and she’s 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 we’ve 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 there’s tremendous support out there for you and just, just hang in there and, and just support one another, and know there’s 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.

Matt’s daughter was born with a cleft palate and is aware that she could experience issues with her speech and teeth in the future. He was reassured to know that help would be available.

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…

…we’ve 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 we’re totally aware that we’re actually going to be under [hospital name] until she’s 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, she’d 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 she’s using the cleft palate, and making sure it’s there and it’s been restored to how it should be.

OK.

And so, yes, we’ve 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, there’s a whole team of people which we will probably be under, as I say, until she’s 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 she’s 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, we’ll contact the speech guys and we’ll be able to help her as much as we can with that. But if there’s 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 we’ll 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 we’ll be thinking, “Oh wow, it’s quite hard.” But, but, as I say, we’ll just, we’ll 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.

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.

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.