So, yeah, from when she was four days old she was diagnosed, and from birth shed really struggled with breastfeeding.

Yeah.

And I’d kind of thought it was because I was doing something wrong, or it was something to do with technique. She… was really having trouble latching.

Right.

And when she did manage to get some milk it was coming down her nose, she was restless in-between feeds, and she was tiring really quickly, and we know now that all of those things combined are key indicators of a problem. But we had no idea, we just, we were… brand new parents and didn’t really know what to expect in those early days, so had no idea that it was all pointing towards a cleft palate.

OK and had you any prior experience of a cleft palate in your family?

Not at all, not in the family.

No OK.

Weve got a friend who had cleft lip and palate, but it was just… not something that really we talked about.

Something you hadn’t really considered, yeah?

Yeah it just hadn’t occurred to us that wed ever come up against it. And definitely, you know, there was, there was no family history. So it just, it hadn’t even factored.

Sure OK, so who was it who made you aware that it was a cleft palate in the first instance?

It was a nurse. So Martha also had reflux when she was born. And the reflux combined with the cleft was making her quite uncomfortable. She was having some choking episodes. And it was when we took her back into hospital to be examined by a consultant she had one of these choking episodes as the consultant was examining her, and he admitted her back into Special Care Baby Unit.

Right.

And as we went through there the nurse who was taking an MRSA swab noticed that the swab was going too far back into her mouth, and she kind of pretty much said straight away that shed found out what the problem was and

Right.

that Martha had a cleft palate.

And this type of cleft palate, is it what they describe as a submucous one?

No it’s not.

Oh it’s not, OK.

So a submucous one would be covered by the membranes, as I understand it, at the back of the mouth. The soft palate, you can really clearly see the uvula at the back of the mouth. It’s usually just one dangly bit: in a child with a soft cleft palate they’ve got… it kind of splits into two.

OK that’s fine, yeah. OK so on hearing that news, what did you do next? What kind of support and help was available?

In the short-term, the very short-term, there wasn’t much support available. We were given a ring binder with a few diagrams in, but the special care nurses weren’t that knowledgeable about the subject, didn’t seem able to tell us anything about what was ahead of us, and what the treatment options were.

OK.

And I was kind of left wondering whether Martha was ill, and whether it was something that was going to, you know, make her sick, didn’t really understand that actually there was, you know, there was a whole team of people who were going to take care of her, and it could all be fixed with one operation.

OK at what point were you aware that she had a cleft palate?

Well it was a normal pregnancy, had to have a caesarean because she was breach and wouldn’t turn, and when she was born she was fine, crying. They did all the basic checks, and it was within the first 24 hours that we realised that something was wrong. I was a second time mum, trying to feed her, and she couldn’t latch on properly: lots of noises, lots of mess. But I was told to keep trying by the midwives. And I was probably seen by about three or four of them as they changed shift pattern, and each one just gave me different advice. They watched me feed her. I was offered a breast pump in the evening. And during that day I did say , Please can I speak to the breastfeeding specialist midwife? because I knew there was one on the ward, but she was only available Monday to Friday, and it was during the day, and I asked for her about teatime, which was too late.

OK.

And she came the next morning, watched me feed [daughter’s name] and heard a clicking sound, which made her say, Can you just… can I just have a look at her again?

Yeah sure.

And then she did a mouth examination and told me that [daughter’s name] had a cleft of the soft palate, which was a shock to me: didn’t know what a cleft of the soft palate was. But thinking back, I do remember I met a little boy at a baby massage session with my son, and he had quite a large cleft lip, and I was confused because I thought the cleft was just lip, not palate as well.

OK.

But the team at the hospital were really, really good, told me everything would be fine. They rang the cleft unit in [place name] at 11 o’clock, and the cleft nurse came by 4.00 with her bottles and her advice and her leaflets.

OK so once the diagnosis had been made things moved on very quickly?

They moved very, very quickly, very quickly indeed yeah.

OK can you just tell me a little bit about that time, that interim period of giving birth and not knowing what was wrong, how did that feel?

It was very emotional because my husband wasn’t allowed on ward until midday, and fathers at the hospital that I gave birth in, that was the normal visiting hours: fathers were allowed on from midday till 8 pm. And I was told at 11.00 that there was a problem with [daughter’s name], so I had to wait an hour for my husband to come.

Blimey.

I also had a bay with three other mothers who were, you know, dealing with their caesareans as well, and I think to see me with probably the screens round me for quite a long time and then coming out in tears were wondering what was going on. But they were lovely. I knew one of the auxiliary nurses as well: she remembered me from when I had my son, and she was really, really good: she came and held my hand and things when we went to see the paediatrician. So I was bumped up, my appointment to see the paediatrician was bumped up so that they could have a look, check all the other normal checks. And [bell rings: brief interruption]. They came and took me to the paediatrician and they had a good look in her mouth and said, Yes it’s definitely a cleft palate, but we know that somebody is on the way, meaning my nurse.

And between you and your husband how much awareness did you have about clefts, and experience?

None.

None OK.

None: a very steep learning curve, very quick learning curve. Lots of Googling, which isn’t the best thing to do, but we went onto the CLAPA site.

OK at what point did you find the CLAPA site?

When we were given the leaflets in the hospital from our cleft nurse. She actually pointed out that CLAPA were a charity that were available to us, especially where bottles were concerned. Because shed brought our gift of bottles, but she said, You are allowed to apply for some more, so you just need to ring the site and then they’ll send you some more bottles out to feed.

OK and what kind of information did you get from, first of all the cleft nurse?

She gave us information about feeding, showed us how to feed [daughter’s name] properly. She told me that I could still feed [daughter’s name] myself and she said they could lend me a breast pump. Because there was a query about [daughter’s name] having Pierre Robin Sequence, she immediately said that [daughter’s name] was to sleep on her side, showed me how to do that, and she also provided a sleep positioner as well for when we came home to help with that. But quite quickly the nurse realised that she didn’t have Pierre Robin, but we still use the sleep

What, within hours, or does it take longer?

Well it was probably by the end of the visit she said, just by looking at her. She gave her a really good examination and said, She probably hasn’t got it. But she also mentioned Stickler syndrome as well, because it goes along with having a small chin and having a cleft.

OK so your daughter was diagnosed with cleft palate, and how old was she?

She was… 10 weeks when I eventually put my foot down at the doctor’s because they weren’t… they weren’t worried about her weight gain, and I was, because she wasn’t gaining very much weight. And I eventually… self-diagnosed it before going to see the consultant. And if they hadn’t have said what I expected them to say I would have told them myself what I thought.

OK you self-diagnosed, OK so what led you to believe that she had a cleft palate?

Because the doctor said she had an abnormal throat shape, so I searched it on Google, as you do.

Yeah OK.

And it came… it came as a cleft of the soft palate. So I searched it, I looked at the pictures and… her throat was exactly the same as… the pictures. So… I was armed with information ready to go and see the consultant.

That’s good going.

Yeah [laughs] so I… obviously if they didn’t give me the answer I wanted I would have told them myself, This is what’s wrong with her.

Did you feel confident in doing that?

Yeah.

You did?

Because I was fed up by that point of being led astray from the doctors telling me nothing was wrong.

So what kind of response did you get from the doctors when you first questioned that there was something wrong?

Reflux, due to paranoid first time mum: that’s how I was made to feel. But I do have more experience than just being a first time mum with… I’ve always looked after babies, and I know, so I knew something wasn’t right.

Right hmm.

She was taking too long to feed; she wasn’t latching or anything so

Were you trying to breastfeed then?

Yeah. She couldn’t. Even it wasn’t even noticed when she was born… by the coordinators so

The coordinators?

The breastfeeding coordinators.

OK and what about the midwives?

They just brushed it off because they were just very off. And they were expecting her to drink and she just wasn’t drinking, but they still discharged us and… it just wasn’t a nice experience in the hospital anyway so

And how long were you in hospital for?

A night.

Just one night?

Yeah.

And they discharged you even though you were having problems?

Yeah but I couldn’t stay in the hospital any longer because it was just not a nice place to be so

OK what was wrong with the hospital?

…The midwife I had was very… rude. I was told to grow up by the midwife.

Right.

Because she wouldn’t feed. And she didn’t offer me any help: just gave me a bottle. But if they’d have checked then for the cleft they would have found it.

Oh.

[laughs] So yeah.

Gosh yeah, so quite distressing for you I would imagine?

Yeah.

So what happened when you came home then?

Just tried sticking with the feeding.

Hmm.

It was taking her two hours to take her bottle, all the nasal regurgitation and bringing up everything out of her nose. I got prescribed different things, like the Instant Carobel and things, and they just, they were helping, but it was still coming down her nose. So… it’s just one of the big signs apparently.

Yeah so at what point did you start to question that and do your own research?

When she started… because she did gain the whole time.

Gain weight?

Gain weight, but then it was very minimal weight gain….She then dropped weight, and that’s when I became upset and… that’s when I went to see the doctors and… said, You need to do something about it. No one seems worried but me, so… yeah, huh.

And did you get many visitors to the home, like health visitors and?

I just had the normal… health visitor come out and check. And she actually had a look at her palate but… said there was nothing wrong with it. The eight week development check…

The health visitor looked and said there was nothing wrong?

Yeah, the same with the doctor who did the eight week development check.

Hmm.

She said everything was fine. But I was having family telling me, Something’s not right, because babies aren’t sick down their nose.

Hmm.

And the doctors were telling me, No, it’s absolutely normal, [laughs] so I was in Catch 22 sort of.

They were saying it was normal?

Yeah.

Yeah that’s quite alarming

Yeah [laughs].

And was your GP male or female?

I see many. I don’t just see

OK you see whoever?

Yeah I see varying different people every time you go in unless you request somebody so

OK so theres no one GP who you really know there so well?

There is since.

Since?

Yeah, it was the one who eventually referred us to the hospital, so I will go and see her every time now.

Hmm.

But that’s… it [laughs].

OK so those three months must have been a difficult time for you.

They were draining.

Yeah how did

You don’t enjoy it.

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.

I was just wondering if you could tell me the story behind that, how that diagnosis was made, and how you first learnt about it?

Yeah well it first was brought to my attention by my friend, who is a teacher at the school that he goes to, just issues that she felt, by the way that he spoke, that he was quite nasally, and his pronunciation with words. So she had sort of… highlighted that, but I didn’t think too much about it because I thought, because myself I’m quite nasally at speaking and also my father, my son’s grandfather is quite nasally. So I thought it was just something that would probably be the same running in the family. But as he got that bit older and I had concerns just… like definitely with his pronunciation of words, and I, and I felt, because he was quite nasally and because he was a boy, that this would maybe affect maybe like other children, making fun of him, stuff like that..

OK yeah.

because of his speech. And I felt like maybe later in life he, if I didn’t maybe look into it, he would maybe wonder, ask me why. So because at times, with my speech, I always felt a little, a little if I heard myself speaking and things I’d feel a bit like, Oh that sounds strange. So I decided that I would make an appointment with a doctor just to get it checked out, make sure there wasn’t anything kind of going on congestion-wise or that.

OK.

Because I’d known when I was younger I got my adenoids out, so I thought, Oh it could be something as minor as that.

Hmm.

So I took him along to the… to our local doctor’s, who had a look in his mouth. They didn’t say anything to me, apart from, Yeah he is quite nasally, well refer him to the Ear Nose and Throat Department. So I got a… an appointment back for that.

OK.

And I still thought it would be something just pretty simple. So we went along to the appointment, and the doctor looked in his mouth, had a look, was really quite quiet. Sent us off for a hearing test. His hearing was absolutely fine. And still, he brought us back into the room, and still at this point I thought, Oh were here, were kind of wasting peoples time here. I thought that’s probably what he was… not going to say, but that’s how I felt. And the doctor did say to me, looked at me and said, Do you realise that your son has a cleft palate? Which at that point I was really quite shocked.

Yeah I can imagine.

Because I didn’t… the only thing that I knew about was really cleft lips. I didn’t know really much about cleft palate. It was only because visually I had seen one, one boy around who had had a cleft lip, so… I was quite shocked because it was nothing visible that I had ever seen. So he said that he would have to be referred to a specialist at a different hospital and they would take it from there. And my first question to him was, well when he described it to me was, Will he need an operation? And he said yeah definitely he would need an operation. So we went from there and… I was quite shocked, but I didn’t really look into it.

Yeah.

And we got an appointment through at the hospital where the specialist cleft team are. And it wasn’t till a friend said to me one night, Have you looked into cleft palate? Have you… have you done a wee bit of research? and I thought, Do you know, I haven’t even looked into it myself, that’s… quite bad. So I went online, just typed in cleft palate, really just to see what maybe the operation would be like, what it would… if I could see a picture or anything of my son’s, what he has. And once I started, as soon as I started opening up sites and reading through it, it was, it just hit me, it was my son was text book cleft palate baby. And all the memories experiences that I’d had with him as a baby, all the struggle that I’d had with him, like milk coming down his nose, not being able to breastfeed, it just all started flooding back. And I had loads of information that I just, I couldn’t believe that that that was my son. So… obviously I was quite upset then, and quite angry.

So reflecting on your own experience, what kind of lessons do you think could be learned from having a late diagnosis?

I think any… health personnel needs to be aware that there are other reasons why a baby might not be able to feed. And in some areas a mouth check is not included as a postnatal check. They do all the other checks, check hearts, livers, hips, you know, check the baby’s head, but they don’t actually look inside the mouth in all hospitals, which I don’t know why. But it’s now part of the foetal anomaly screening that they’ll check for a cleft lip, but you can’t check for a cleft palate. They will, if there is a cleft lip there, they may say the palate might be involved, so they do it about 20 weeks.

So they’re still only looking for the visible?

They’re still only looking for the visible. But I think it’s very hard to see a cleft palate. I’m not sure whether they can find them at 4D scan either. But if… if there is a problem with feeding, why isn’t the mouth looked inside straight away?

It’s bizarre.

When I think back, yeah, when I think back I was given, you know, Keep trying. Try a breast pump, express and well feed the baby for you. You’re not doing it right. The baby is lazy. The baby is still sleepy from anaesthetic, so all those things, and all it could have been, you know, was a quick look in the mouth. But I will say, from my last talk that I did, I met one of the midwives who helped look after me in hospital, and she actually says, If I ever see a baby with milk all over their face again making a clicking sound, I’m going to look inside their mouth straight away. So just from her looking after me for one four hour shift, or six hour shift, shes now more cleft aware. And then I think of one other midwife, who had been a midwife for 26 years, and only ever delivered one cleft baby in 26 years. So that’s

That’s the level, yeah?

That’s the level, yeah. And some of the midwives only work part-time, some only work evenings, do the night shift.

That’s true yeah.

So they have no, they have no opportunity. Which is why, when [daughter’s name] was born, I didn’t mind whoever came to look inside her mouth to have a look to see what one was. And the same with health visitors: they have the other issue where they’re not allowed to examine a baby but they can advise. So they can’t look inside a baby’s mouth, but if their mother says, I’m having problems with feeding, they can suggest maybe get an appointment with the doctor and get the doctor to look inside the mouth.

Do you have any advice for health professionals at all? Through this experience you’ve had, is there a message you’d like to put across at all?

That I think mums know best, [laughs] they really, really do. With the experience that we had at the very, very start, and no one listening to what I was saying, you really need to listen because… what I was put through with people not listening to me… that still… sticks with you forever, that you weren’t listened to and something was wrong. That is it really. I can’t really think.

Hmm.

But the cleft team are amazing people.

So it’s more a question, it’s the people?

Hmm who aren’t related with the cleft team.

So do you think there is an issue there around awareness?

Yeah… there definitely is an issue around the awareness. And I’m hoping to make it more aware in our area so… by displaying the posters in the GP surgery and things.

Do you think it’s a particular problem in your area or is it something?

It’s the whole of, [place name] by the sound of it. It’s quite… the cleft being, not being missed for as long as three months is quite bad, huh, really.

Hmm.

And for doctors not to even pick that up when I was going every single week with a problem with her about her feeding… and there being the obvious signs there, obviously something needs to be… said and done.

OK so there have been some positive outcomes as well?

Yeah they are a really willing team of GPs at our surgery. And they all came to the training session that me and our cleft nurse did, so… yeah.

OK can you tell me a little bit more about the training day?

We went in on the dinnertime training session, and I took the baby, and I explained how it made me feel with them not listening to us. Our cleft nurse showed them a slide show of… how to spot a cleft, how to identify it, how to diagnose it, the, the, the main symptoms of a cleft….And we just talked, and they asked me questions and… it was just really, they were really welcoming and open to learn about it.

Yeah.

Even though they will have already learnt about it, they obviously… needed a bit of a boost.

That’s encouraging that it was well attended, you said.

Yeah it really was. My health visitor came and… one of the nursery nurses from the health visitor team came as well and they were all really keen to learn, so yeah.

I know this has been a very difficult time for you, what would you say were the positive, are there any positive things which have come, that have come about through your experience with your son’s diagnosis?

Well from… the biggest positive is myself, looking back, how… because I used to feel guilty about everything, beat myself up about everything, everything, I just thought I was… just wasn’t good at being a mum. So the biggest positive is… actually… having faith in myself and knowing that I actually, that I really, I am a good mum, and I am a good person. And having that fighting spirit that I never had before, which I have now, for to… that I can go out there and… fight for what I want. And also… raising awareness, I feel like this is going to take me further out into the big, to the big world, raising awareness, maybe fundraising, which I’ve already done bits and bobs… which I love doing anyway. So just kind of furthering, meeting people, other parents as well who are in the same situation.

So you feel like you’ve got a lot of experience you can give back?

Yes aye, yeah definitely. And like setting up a team in the area, a support group that I can be there to, to listen to someone who’s maybe just starting out on that experience, on that, on that trip.

So you’re saying you felt that theres not enough awareness within the health professions as well, but there isn’t?

Right yeah well

The support isn’t there?

Uhuh.

in this, in your geographical location?

Hmm, hmm yes. And definitely, I feel like… they don’t really give you much information, like the health visitors, midwives. I didn’t… I feel like you’ve kind of got to go and seek that yourself. And some people maybe aren’t like me, who has that kind of fighting spirit, and can say, Right, this is what I’m going to do, and I’m going to do it, and I’m going to make sure everyone, so some people don’t have a lot of support from family or friends, and are quite isolated, and that could be really lonely and really hard. So, yeah, I feel like if I’ve got the time, and if I’ve got the attitude to do it, then that’s what I need to do, to help other people out there, and make professionals aware of this happening, and how it feels.

Hmm so you’ve had a lot to take on in a very short period of time, how has that affected you as a person and how have you coped with it?

It makes you more determined to get the answers that you want.

You do [laughs] you become less scared of going to see doctors. I’m… up at my GP surgery every couple of weeks with her, complaining theres something wrong. And I’m usually right now because I know what to say and I know how to put my foot down with them.

So do you feel confident?

Yeah [laughs] I do; I’ve become a more confident person, because I know I’m not fighting for myself, I’m fighting for her.

Hmm so has it kind of changed the way you approach things in life a bit?

Yeah because I used to be a really shy person and I’m not anymore. I’ll tell them what I think now, because… they messed up, they really messed up [laughs].

Hmm.

So yeah.