And what would you say the level of awareness was amongst your local community about cleft issues?

I’d say generally quite low. If I had £1 for every time someone said, Oh but you can’t see anything, looking at her lip, I’d probably have paid off the mortgage. That’s been a really common… comment that people make.

I mean it is, it’s an unusual thing, isn’t it? You know, I didn’t know anything about it. And I think in a way that makes it easier to understand other people not knowing anything about it.

Hmm yeah that’s true, yeah, yeah.

And obviously with kind of close friends, you know, they probably know as much about it now almost as I do. You know, weve sort of talked about it a lot as time has gone by. And, you know, I do get a bit annoyed sometimes at silly comments people make. Because now, for Maisie it’s, you know, her speech is kind of, you know, it’s obviously not what it should be. And as time has gone by shes kind of… it’s become, becomes more and more obvious as her peers’ speech has developed.

As a health professional yourself, how have you found that communication and the way information is imparted etc., and do you feel involved in decision making?

Yeah mostly. So ENT doctors, you know, some of those have been a bit disappointing. And the doctors very early on that made the diagnosis didn’t do it in a very helpful way.

In what way was it not helpful?

They… I think they were a bit overly dramatic with the kind of… the one in ten chance of there being a bigger problem. And also like when they kind of had to take Maisie away to kind of, to look at the palate, and because I’d had the caesarean I couldn’t go with them. So [husband’s name] went with them, and he was very sensible and said to them, you know, What are the long-term implications of this? And they said, Well none. It’s all stuff that a child grows out of.

Yeah.

And [husband’s name] said, Well when you go back in and talk to my wife, you know, will you please make sure that’s the first thing you say to her? and they didn’t. There was no apparent thinking for the fact that this was my baby; it wasn’t just an interesting medical… scenario for them.

Yeah it’s a real person.

So, yeah, so that… that really could have been handled a lot more sensitively. And I think that would have… made quite a big difference actually to how I coped with hearing the news and… sort of… yeah, what that day was like for me really. But on the whole I think… we kind of feel like weve met a lot of amazing health professionals. Speech therapists have been consistently amazing. And the cleft team always been, you know, very knowledgeable, very supportive. And I think, you know, having worked in the NHS and seen areas where things are really kind of underfunded and delivered on a shoestring, I’ve been really impressed that the system feels really robust.

OK hmm.

And things like the hearing tests and the speech therapy assessments just kind of automatically being in place.

So is there a sense of continuity then?

Yeah, and I’ve never had to go to the GP or the health visitor and say, I’m a bit worried about Maisies speech, or, I’m a bit worried about this. It’s all been anticipated and it’s been… it’s been monitored.

So you haven’t had to prompt yourself so much?

No.

OK that’s interesting, yeah.

So that’s, yeah, that’s been really comforting… and sort of yeah to kind of… it makes you feel quite well held, rather than, you know, this is… a scenario that no one knows what to do with or… it’s kind of, yeah, it’s like it’s all taken seriously and kind of

So it’s given you some confidence?

given what I need. Yeah, yeah absolutely.

It was quite difficult to come… to get out of hospital because at that time the hospital didn’t have a policy for home NG feeding.

Oh OK.

So one of the consultants was… kind of gave me the choice: did I want to take her home with the tube and be taught to tube feed or did I want sort of her and me to move to the children’s hospital? And I said home. Obviously I’d been watching the nurses tube feeding and I thought, you know, It’s not that complicated. But because there was no policy for it I spent all of that Monday that I eventually got home, different people having different ideas about I needed to be taught first aid, or I needed… they kind of… someone found a policy from the community nursing team of how they teach people to tube feed, so maybe we could use that. And all day it was kind of people putting up these barriers as to why we couldn’t get home, and me just getting like… it just was ridiculous. Because [laughs] I mean initially they’d said it would probably be just a few days with the tube. And then what we were doing was she was having a little bit from the bottle, and then what she couldn’t manage orally wed put in the tube. But the amounts were… were so small that she was taking, it was going up so slowly that we could tell that… it was, it just was going to take her a bit longer. And it was like, Well they can’t. It just seemed ridiculous to think that they would kind of keep us in hospital for weeks on end just because of that [laughs]. So eventually we got out on that Monday night… yeah, absolutely exhausted.

So… only in the last month or two joined the, the sort of parents’ forum on Facebook that CLAPA organised.

Yeah so could you say what influenced your decision to get involved, or not to be involved earlier on and to be involved now?

Well earlier on I’d had really good support from friends and, and my mum, and didn’t feel like I needed it. And in a way didn’t… I don’t know, I think we felt a bit of a reluctance to… to kind of to mix with people where the only thing we had in common was, was cleft.

Yeah.

It kind of felt a bit… artificial. It felt a bit forced. So we kind of didn’t, didn’t go down that road. And I think, yeah, because I had good… you know, good support around, didn’t really feel like I needed it. Where I feel like it’s more come into its own recently has been… I suppose also when Maisie was a baby I would have predicted that she wouldn’t have had problems with glue ear and she wouldn’t have had problems with speech, even though I knew those were possibilities. And we have had problems with glue ear, which… fingers crossed seem to have resolved.

Yeah.

And were having quite… significant problems with speech. So that’s kind of made the cleft be more of a thing than I thought it would be.

Hmm yeah.

So as time has gone by I’ve thought actually I need to get a bit more involved in the cleft world.

Yeah.

And partly about getting information from people, but also on the forum I’ve… it’s been quite nice actually to share my experiences with people who have had new-borns, and to say, This is what it was like for Maisie, and it’s quite nice actually to be able to help people, even though I joined up wanting information.

Has that helped you as well personally

Yeah, yeah

to deal with the emotional side of it?

Yeah because I think theres, you know, part of me, it’s almost a bit like I’m saying it to… to myself three and a half years ago and kind of, you know, that bit of reassurance that even though I didn’t feel like I needed it or went looking for it, it still would have been nice to have. So theres that, you know, empathy with, with parents who are kind of earlier in the… the journey.

The cleft nurse was brilliant at explaining it and gave us some… some kind of some booklets about it….So that kind of helped us to get our heads round it. And then we thought well, you know, because we were having problems with feeding, we were kind of like, Well that’s the bit we need to think about. And we kind of… the two things that we knew to think about for further down the line were the possible glue ear and the speech problems. And we knew that she would be facing surgery when she was kind of six months. But, you know, with a newborn that just felt like… a kind of lifetime away. So, to be honest, we didn’t really think about all of that stuff; we just very much were like, Well well cross that bridge when we come to it….So that it was kind of, yeah, once wed got feeding sorted, then it was kind of like, OK surgery is the next…the next bit we need to think about.

So did you meet the cleft specialist team?

Yeah we met them, I suppose, when she was about two months old…. And so by that time it sort of felt like we kind of knew what we were dealing with. And then she was… six and a half months when she had her surgery.

Which felt really worrying in the build-up to it, and then my niece got very, very ill with meningitis, and, and nearly died, you know, couldn’t have been worse. And that… that put Maisie things in perspective. And then they ended up both having surgery on the same day which, you know, is weird how that sort of thing can happen. But it, it just reminded us that… what we were dealing with in the grand scheme of things was really not very much

Yeah.

compared to what a lot of families have to cope with. So that was… yeah that was, that was really helpful for us in the build-up to the surgery and the aftermath. And the surgery at that stage, you know, went really well.

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.

It varies. Sometimes it’s fortnightly. Were on a bit of a break at the moment because of a surgery coming up. But sometimes that’ll be twice a month. So sometimes I’m having to kind of squeeze my work into other days or having to take time out of work to go to appointments.

Yeah so you’ve had to compromise on your career a little bit, would you say, or?

Yeah, yeah which is

Is that fair to say or?

Yeah, yeah which absolutely is… you know, I don’t begrudge that at all. But I think it

And would that be an influence in your decision to leave your role in the NHS

Yeah.

and go freelance?

Yeah, yeah. My, my boss was always very understanding and, you know, would kind of let me have time off for Maisie appointments, but it would still be a pressure because I didn’t, I wouldn’t have had childcare in place to make up those hours.

Yeah.

So it would mean that I kind of, you know, was either not there for people that needed to see me, or I was kind of trying to squeeze too much work into not enough time. So yeah even though kind of management were very supportive, it still felt like a pressure with the kind of work that I do to, to get that done.

Yeah I can understand that, yeah.

And so it… and I feel bad even saying it because, you know, I’d do anything for either of the children. But I think it is that still kind of living with it week in, week out: it’s kind of, you know, compared to if Maisie hadn’t got the cleft, theres been more stuff to try and squeeze in. It’s been more difficult than, than it would have been otherwise.

Yeah it was a really big shock, you know, it was a horrible… kind of thing to have happened. Also the doctors were saying to us that there was a one in ten chance that the cleft was part of a bigger genetic problem….So that was… you know, in one way that was a worry, but in another way it was kind of, well, you know, shes our baby and well kind of… whatever it is it is well deal with it. But I remember kind of… ringing my mum and kind of like, Well how much do I say over the phone? and kind of getting my parents to come and see us in special care, and the whole thing seeming really surreal, and not really, the whole of that day not really having any sense of really what was going on. And the next day, so when she was kind of, yeah, so 24 hours after diagnosis, the specialist nurse from the cleft team came, and she was absolutely amazing: said that… well pretty much gave us the impression she thought this one in ten chance of a bigger genetic problem was kind of nonsense, because there was nothing else medically wrong with Maisie. She said if there was another problem then that would kind of seem more, more likely. But, you know, she felt it was much more likely that it was just a cleft. And she was… you know, I think by that time I was a bit more able to… to kind of take information in.

And at what point was it confirmed that there were no genetic issues?

I think she was about six weeks old.

Oh right, so there was a few weeks of

Yeah so they took… they took blood from her while she was in special care. And I can’t… I can’t remember now when they… what the process was. I think what happened is they came back and there was… there was something a bit funny on one of her chromosomes. And I think it was then that they tested… my blood and [husband]’s blood. And then they found that I had the same thing, and because I haven’t got a cleft it… you know, it was sort of not cleft related.

Yeah.

And the way they explained it to me was that when they do the genetic testing they find so many odd little things that they don’t know what most of them or, yeah, don’t know what a lot of them mean.

Yeah it’s not well understood.

So a lot of it, they find these things but don’t know what they really mean in practise. But by the time we kind of had that all-clear, like we sort of knew it really. We I don’t… yeah, we weren’t really worried about that after the cleft nurse had kind of reassured us on it. And I think partly because my mum has worked with children with special needs, and for me working in healthcare, it’s kind of I’ve worked with people with special needs and kind of thought, Well if that… if that’s… if that’s kind of the scenario were facing actually we can… were probably quite well placed to deal with that. But by the time we kind of got the sort of all-clear on that wed… yeah, she was developing really well and we sort of knew that that… wasn’t really anything.

And so perhaps we could start by telling me how you first became aware that your daughter had a cleft palate.

Well Maisie was born by emergency caesarean on a Sunday morning. And kind of as soon as she was handed to me what I remember was her kind of [makes suckling sound] kind of wanting to feed, which seemed like a really good sign because when [son’s name] was born he hadn’t shown any interest in feeding and it was quite difficult to get him… to get him feeding. We got there in the end; we got him breastfeeding and that was fine. So Maisie was kind of really trying to feed but kind of just couldn’t quite manage to latch on all, sort of all of that, all of that Sunday daytime and night time. And I wasn’t concerned about it because of how [son’s name] had been. And kind of the… what the midwives were saying was it was kind of, you know, I was doing the right thing, she was doing the right thing: they were kind of expressing confidence that shed kind of it would probably just click. And I noticed that day that the roof of her mouth didn’t look… didn’t look right. But it didn’t occur to me that there would be something wrong with her. I just sort of, in my just given birth state, just thought, Well that must just be what babies’ mouths look like and I’ve never noticed before. And I felt really guilty about that afterwards: didn’t tell anybody that for months and months and months. Because, like I say, you know, in herself she seemed sort of fit and well and kind of, yeah, trying to feed, doing all the right things. And it was the next morning when the doctor came to do her newborn check that was, that was when they diagnosed the cleft. And it took three doctors for me to believe it. Because first of all it was a registrar, but she said she thought Maisie had a cleft palate but wanted to get a more senior registrar to look at her. And I just thought, Oh when that doctor comes shell say, no, she hasn’t got a cleft palate.

Right.

And then she said, Yeah shes definitely got a cleft palate, but I need to get the consultant to see her to make the sort of formal diagnosis. And I just thought, Oh the consultant will come and say, no, she hasn’t got a cleft palate, you know, you’re talking nonsense. You know, so I was really kind of quite complacent about the whole thing. And then when the consultant came, and it kind of… it was… my memory of that time is all a bit disjointed: it was such a shock that there was something wrong with her. And I’d never heard of a cleft palate. I obviously knew about a cleft lip. So all I could think of was, She hasn’t got a cleft lip. Look at her, you know.

OK.

So really hard, like massive shock, really hard to… to sort of… to take it all in. I became, you know, I was very, very upset. And I remember the consultant talking to me, and I could hear her individual words but I kind of couldn’t put the meaning or put the sense together.

Hmm.

And kind of… and I remember there being this room full of people. Because the speech therapist was called to try and come and help her with feeding. And then she couldn’t use the squeezy bottles. And they were saying, Oh maybe it’s because shes… shes been 24 hours now and shes not had any milk since shes been born….But they decided that she would need… she would need NG tube feeing, and for that to happen.

And that’s through

Yeah.

nasal-gastro?

Yeah.

Is that the right word?

I think so. But, yeah, the tube thing.

I know yeah, yeah.

And for that to happen she had to go… she had to be in special care. And it just, in my mind, it had just gone from this kind of healthy, happy baby doing really well to suddenly feeling really quite overwhelmed by it all.