Natalie

Age at interview: 49

Brief Outline:

Natalie works for her husband who is self-employed and also works voluntarily as a Parent Contact for her local branch of CLAPA (Cleft Lip and Palate Association). Natalies’ 13 year old son was born with unilateral cleft lip and palate. Natalies’ son had his cleft lip diagnosed at a routine 20 week scan.

Background:

Natalie is White British and has a daughter of 19 years and two sons of 16 and 13 years.

More about me...

Natalie works for her husband who is self-employed and also works voluntarily as a Parent Contact for her local branch of CLAPA (Cleft Lip and Palate Association). Natalie is White British and has a daughter of 19 years and two sons of 16 and 13 years. Natalies’ 13 year old son was born with a unilateral cleft lip and palate.

Natalies’ son had his cleft lip diagnosed at a routine 20 week scan. Unfortunately, the sonographer broke the news to Natalie while her husband was out of the room (he was feeding the parking meter). Natalie was not given any written information at that point. Natalie and her husband were then taken to the Foetal Medicine department where they were told of the possibility of other conditions that could go along with the cleft. 

Natalie felt that they were given too much information at that point as some of the conditions they were told about were pretty dire. After they left the hospital they could not remember what they were told, whether the cleft team would be in touch, and they were then left on their own to digest the information without knowing what the next step would be. Natalie then started to wonder what could have caused the cleft and felt guilty that it may have been linked to something she had done during the pregnancy?

When Natalies’ son was born the biggest challenge for her and her husband was getting organised for feeding, getting the right bottles and advice. She was surprised how little the midwives knew about feeding babies born with a cleft. At three months he had his lip repaired which was strange because Natalie had got used to her sons’ look with a cleft and was concerned about the operation that was going to change his look. Going through the operation was difficult for Natalie but he was discharged the next day as he had no other problems and his scar healed well. However, it was difficult to reestablish his feeding and once again the nurses appeared to be inexperienced when asked for advice. 

Natalies’ son has had further surgery to repair his palate at 6 months and a bone graft. He has also had a ‘Furlow’ operation to improve his speech and he no longer needs speech and language therapy. Natalies’ son is now at secondary school which he enjoys, is part of a good social group and is engaged in lots of sport which gives him confidence.

Natalie recalls how the sonographer handled the diagnosis of her sons’ cleft at her 20 week scan.

So can you remember how that was communicated to you? Was it mainly through verbal consultation?

It was, it was a little bit tricky. Because my husband had gone out to... feed the meter, and it was obvious that the sonographer had detected something and she was a little bit edgy, and she didn’t want to say anything until my husband came back.

OK.

And he was gone for quite a long time, and in the end I think she just thought, “Well I’m going to have to say something.” So it was all a bit, it was all a bit uncomfortable really.

For her I think because she just, you know, she was waiting till he came back, but in the end didn’t, and so told me while I was there on my own.

Oh right.

So that was quite hard really in a way. Because then, you know, she told me, and then when he eventually did come back in of course I was fairly upset. He was, you know, “My goodness, what’s happened?” So she had to tell him, so the whole thing got repeated again.

No I mean at that point we sort of left the room where we’d had the scan and were kind of ushered into this side room, and that was all a bit kind of like, “Oh,” you know, with no one with us, just sat there sort of, “OK what, what happens now? Oh my goodness,” you know. We probably weren’t waiting very long in that room but, you know, it feels like it’s forever. But fortunately well I don’t know whether that would happen as of norm, but we were, we were then taken through to, as I say, the foetal medicine department where I had a much more detailed scan.

OK.

And partly that was a good thing; partly not. Because those, that team of... people then sort of gave us... probably too much information almost, in the sense that we were told what other conditions…

Right OK.

…could go along with the cleft.

Right, the syndromes?

And that was pretty awful actually, because I mean I’d almost have preferred, but that’s me personally because I don’t... I suppose... I wouldn’t say I’m an ostrich, but I kind of, OK, I’m dealing with one thing here, I’m not sure I want to hear everything else.

I think if we’d just sort of had that more detailed scan, we learnt the sex of the baby, which was quite nice in a way, I mean I wasn’t... didn’t want to find out having, you know, before that, but once we knew about the cleft I thought, “Well let’s prepare for everything here in terms of that.” But I’m not sure I then wanted to know all these other conditions which, you know, some of them were pretty, pretty dire you know.

Natalie found that one of the hardest things about telling other people was not knowing the cause and the extent of the new baby’s cleft.

And that was perhaps why I was finding it hard to tell family and friends. Because if I could have just, if I could have, if I could, someone could have said to me, “One hundred per cent we know the baby’s just got a cleft lip,” I know that they can’t detect the palate and, you know, maybe, but if they’d just said that. ...But, you know, the medical profession can’t, there’s always got to be that caveat, hasn’t there, that, you know, there could be something else? But if they could have told me that I think I would have then thought, “Right, I can really deal with this, you know, look at, look at pictures, understand what’s going to happen in terms of surgery by talking to people, and appreciate it,” because, as everybody tells you, it is only cosmetic. You know, it’s not, it hasn’t, the baby hasn’t got a heart condition ...that you know of, that’s the thing. But, you know, in terms of just the cleft, you know that ... it’s not life threatening and, yes, they’re going to have to have some operations, but it is cosmetic, marvellous things can be done, you can get through it. But certainly from the start, having heard all that stuff from the foetal medicine people, it was like, “Oh my God, you know, what else could be wrong here?” We were offered the amnio, so of course we had to go through all of that discussion. Both decided, for various reasons, you know, my husband’s from a religious point of view, me just well, you know, I wouldn’t want to have possibility of, you know, miscarrying, so let’s just go with it anyway and forget having the amnio. But all of that is there, you know, because they have to tell you all of that, but it doesn’t really... you know, makes it hard, makes it harder than if you just thought it was a cleft.

Yeah.

So but definitely knowing, knowing at diagnosis rather than... you know…

…at birth?

…at birth, was definitely easier because, you know, my two kids were, what, 7 and... 4, 7 and 3, something like that. And particularly I don’t think the youngest boy really took it on-board, but my daughter certainly was... wanted to know and, you know, you can prepare them.

Hmm as well yeah.

It would be quite shocking, I think really, if you arrived home with a baby that didn’t look quite right.

So he already had an older brother and sister.

Yes, yeah, yeah so, you know, it was easier to prepare, as I say, the daughter was, my son was only 3 so…

Yeah.

…he didn’t really take it on-board. But yeah you could like... that made it easier. ...Trying to think, and I mean, yeah, didn’t know, didn’t, as I say, didn’t really know anybody. I would have liked to have been able to talk to somebody that had gone through it…

Yeah hmm.

…at the time, having had the diagnosis.

Natalie’s third child was born with a cleft lip and palate. Natalie was relieved when he was born and was able to bond with him.

OK is there anything else you wanted to say around that, around the birth and your adjusting?

No I, I, yeah, yeah... well obviously it was... well when he arrived I think, you know, there was an overwhelming sense of relief that it was the cleft and the cleft palate and, you know, everything else seemed to be [laughs] intact, bless him.

OK yeah.

So yeah that was a huge sense of relief I remember you know, and I remember the birth, well the birth was fairly straightforward like my other two have been, I was really lucky.

Yeah.

And it was a massive sense of relief and, and... yeah I mean he arrived and you just think, “Well yeah... love him just the same as the others, looks a bit different, but yeah.”

OK.

Yeah, yeah and you get, so quickly get used to the cleft, the look of them and the, it’s amazing.

OK sure, yeah that’s interesting, I was going to ask you about that.

Yeah really so easily, so quickly, so... I don’t know, it’s interesting as you know, I suppose it’s like, you know, you just hopefully, I know it doesn’t happen always, hopefully you bond with your baby whatever.

Natalie explains how he became involved with CLAPA as a parent contact and how it has benefitted both her and her son who was born with a cleft lip and palate.

Well I suppose, from my point of view, everybody deals with it differently, don’t they? And I decided that the best way for me to deal with it was to get involved with, with CLAPA branch, and CLAPA itself. Because I hadn’t had anyone to talk to, I trained as what they call a parent contact, they do this training.

Oh yeah, yeah.

And I did that quite some time ago now. And now only, I think, was it sort of, it just seemed the right time to do it.

Sure.

And... yes I did it because I want to help parents and support them if they need it, but also for me it was a way to, I don’t know, just process the whole thing really. And the training was great. And I just remember it was the first time, I think, I’d sat down with other, well it was all mums, there wasn’t any dads there, mums and, you know, just completely opened up about my experiences. And... that was a good thing.

Yeah.

Yeah I remember there was a psychologist there, and she spoke to us and said, you know, “This is, this is a good thing you’re doing here, and for whatever reasons.” And she definitely put it into perspective, and I kind of thought, “Yeah that’s, that’s what it’s all about really, is, is trying to support people when they need it.” And not everybody needs... needs it. And, you know, and I know lots of people get their... get sort of strength from talking to people on-line, and that’s fine. Me personally, I’d rather talk face to face with someone.

But yeah, just kind of seek whatever... help is out there really, if you want it, just so that you can... open up about it. I think it’s, you know, that’s important. And it’s important for the children as well, you want them to... just accept, accept the, accept what’s happened.

And, you know, once you’ve accepted it you can hopefully, you know, in the way [name of child] I know he deals with when people do ask him why he’s, why he looks, you know, his nose is different, and he’s got, and he, you know, he just says, “Well I was born like it,” you know, and that’s because he’s accepted it and that’s what it is, fact.

OK.

And, you know, so yeah, I don’t know, just, just keep... keep an open mind, keep, keep talking about it with the kids and... 

So just being open?

Yeah, yeah, yeah and take what, whatever, ever help is out there medically, you know. Because you don’t quite know what they, they might need in the future. Because you focus so much at the beginning on those ops.

Natalie describes how her teenage son born with a cleft lip and palate may need further surgery to straighten his teeth despite wearing braces.

And we came away from the orthodontist last week, and he had said it’s really difficult to tell at the moment what further operations he might have to have because we’ve got to wait till he’s fully grown. In terms of his teeth, they are a right mess at the top, and he’ll have to have a brace for quite some time. And I don’t think that fazes him, in that sense. I don’t know if it makes a difference that he’s a boy and he’s quite, you know, tough, in a way, I think he is.

You see more boys wearing braces these days as well.

Yeah oh that doesn’t really bother him. And he could have the brace for quite some time. But the orthodontist was talking about this osteotomy operation that he may have. Because I didn’t appreciate, you know, the whole mechanics of it, but having had the cleft, the top jaw can end up sort of, in profile, being flatter. And, and then they have this osteotomy, which looks quite a horrendous operation. But, you know, but that did give me an opportunity to talk to him about that. And he’s obviously old enough now to, you know, and I said to him, “It will come to the point where you can make those decisions, you know, at 18 it’ll be up to you.” And I say to him, “Well what do you think, do you think you’ll have your nose rejigged?” or whatever expression I use.

Natalie’s son was born with a cleft lip and palate and he had lots of speech therapy. His speech continued to improve following further surgery as he got older.

Yeah he’s had... he had grommets, he’s had what’s called a Furlow operation on the soft palate, I think, is that, I think they call it a Furlow. And he’s 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 he’s, I’m told, I didn’t appreciate but, you know, he’s 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 he’s 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.

Natalie’s son’s engagement in sport has helped his confidence and the acceptance of his fellow school pupils.

I’d like to think that he’s... OK [laughs]. He’s a normal 13 year old, can be a right pain in the neck. I think he’s adapted and accepted... what’s happened to him. I really, I would like to think he has. I think he is pretty balanced, pretty, you know, I... I suppose it’s like anything, you never know until much later on what impact it may have had on him.

I hope it’s been a positive one. Because he, you know, everyone will say to me, you know, when they meet him, he’s always cheerful, he’s quite a... I wouldn’t say he’s massively confident, but he’s fairly confident. He’s got lots of friends and he’s just really normal, I think.

What sort of interests does he have?

Sporting, he’s really, really into sport yeah. He’s very fortunate he, that we, well they, the kids go to a nice school that is able to offer them lots of sport, which he loves. And that gives him, I think, a bit of…

He’s very engaged with that then?

Yeah that gives you, I mean especially as a boy, that gives you a bit of, you know, confidence that, you know, you’re in with the, in with the cool ones. Academically, he’s not up there necessarily... he’s, he struggles a little bit with his English. But he gets lots of help at school. And… he’s not going to be any great academic, and he’s not desperately into his studying or, you know, he’s not a boy that’ll sit down and read a book voluntarily.

So would you say…

So sport’s his thing.

OK so the academic…

So I’m not quite [laughs] sure where it’s going to lead him but…

The academic side of things, do you think having a cleft has affected that at all, or is it, I mean is there any indication?

I don’t think so, I don’t think so. Other than perhaps... but I wouldn’t relate this to the cleft, he will say, because of his English is not great and he struggles with his spelling and he’ll go, “Oh I’m stupid, I’m just stupid.” You know, I say, “No you’re not, you know, you’re just, you know, this is an area that you’re finding difficult but you’ll get through it.” But I don’t think that’s related to the cleft, I don’t think so.

Natalie’s son was born with cleft lip and palate but through having good experiences at school and socially he has developed a strong identity.

I really, really don’t think it has, because he is quite a robust kid. And he’s been quite fortunate with the schools he’s gone to, I think, they’ve been supportive and he’s not had to change schools very often. Well he was at primary junior school and then we changed him to senior school but…

Is he aware of any other children with a cleft at all?

Interestingly there’s a lad that’s just come to his school that has got a cleft, that we’ve met before.

Yeah OK.

But apart from that, no. And he’s a bit resistant now to come to any of the events that I get involved with. He just, it’s not cool anymore. But I wouldn’t push him.

You’d say he’s fine with his own identity then?

Yeah, oh yeah, yeah, yeah, yeah and…

Not, not needing to…

No not need, well, you know, I think…

Not needing to be part of…

No, any kind of…

…of a, yeah, of a group?

Yeah but I think he, I think he knows, hopefully, through what I do and get involved with, that, you know, he’s not on his own.

Yeah.

He’s not some kind of, well I don’t want to use the word “freak” because that’s awful, but he’s not that kind of, he isn’t on his own with what he’s got as a condition and what he’s been through and what he might have to... he knows that, I think, because of what I talk about and what I do with the, with CLAPA and the branch. And, you know, we have Christmas parties, we have summer parties, he doesn’t want to come to them anymore, and that’s fine, I’m not going to push him. But he knows that... there are loads of other kids out there like him. I’d like to think he does, hope I’m not putting [laughs] words into his mouth, or thinking things that he’s not thinking. But, you know, you kind of sometimes do that as a parent. But I’ve tried really hard to... to make him… feel... like it’s just something he can talk about, or hopefully accepts what it is, and that it’s no big thing really, you know. And so yeah, no, thankfully, God, he hasn’t had, I really hope he doesn’t at any point, he hasn’t had any bullying.