Can you tell me a little bit more about the lead up to the operation and how you prepared yourself as a family?

The lead up to the operation was the most awful two weeks ever, because we only got two weeks’ notice.

Only two weeks?

Only two weeks. But if it’s got to be done, it’s got to be done. I suppose it being so soon it didn’t give you as much chance to… worry and think about things. But you’re still very… our nurse came out and gave us… a run through of what would happen when we got to the hospital, and the post-op, and then actually going up onto the ward and seeing the anaesthetist.

Because wed already signed the consent form, so there wasn’t need to do it when we were in hospital….But yeah, we knew she needed it doing. It was harder because you couldn’t see anything… physically wrong with her, if you will.

Because it was inside, so we couldn’t see anything wrong with her. I think if we could see something then it would have been easier for us to… comprehend with, if you saw her there.

People do need to really be made of aware of it. It needs to be covered in everything, because even as a nursery nurse I’d never seen one case of a cleft.

You didn’t, no?

No. And I know

It’s not in their training?

No it’s not. It, it, obviously… they can’t cover everything, because if they covered everything then you’d be there for years studying. But… there just needs to be some… awareness about it.

It sounds like the health visitors and midwives were not aware as well, in your case?

No, because the health visitor who I have actually has practised for 23 years.

23 years hmm.

And… were the first cleft case shes dealt with [laughs] so that’s just quite scary actually to think about… how far and wide it’s not

So would you say there was a need to include it in, make it a?

Maybe not officially, but maybe offer the training help, because I think that would benefit… a lot of people who don’t actually know what it is and know what we go through leading up to the operation and dealing with a child with a cleft, because it is different to looking after a baby without a cleft, because of the feeding.

Yeah.

Especially if it’s a second or third baby, you’d know the difference.

Sure.

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.

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.

So what services kicked in then once the diagnosis was made? What happened?

Well… we got to see a dietician because of the weight gain, got to see… got in touch with the… CLAPA… then we had genetic testing.

You had genetic testing?

Yeah she had genetic testing because it was a cleft.

OK is that a routine thing with a cleft?

Yeah it’s a routine test that they did just in case. So she… that came back that she had Di George Syndrome.

OK could you just spell that for me please?

It’s Di George and then Syndrome.

Di George Syndrome.

Yeah.

OK thanks.

Which led to… because it is genetic… and so it went to me and her dad being tested, and it also came back that he had it.

He was a carrier?

No, he actually has it.

He actually has it?

Yeah.

OK and what does that mean? How does it affect you as a person?

It affects everybody differently.

Right.

So 174 symptoms of it, that no two people are exactly the same.

OK yeah.

…Being diagnosed so late her… dad wouldn’t… he doesn’t show many symptoms at all, but it does show the fact that… he has had it, and you can tell when hes been growing up: things all link up to the Di George.

OK what kind of things are they?

The learning difficulties.

OK yeah hmm.

The ADHD when he was younger, the hearing problems.

OK.

Immune system, yeah.

So is it a kind of systemic problem then that can affect?

It affects the mid-line everybody.

Mid-line?

Yeah so everything on your mid-line, like your thyroid, your thymus gland…

OK yeah.

Your brain, your heart, your liver, kidneys, spine, it can cause scoliosis and things like that.

So it’s quite serious?

Yeah.

Potentially.

It can be.

Yeah.

Yeah [laughs] and people do lose their life on it with the congenital heart defects that it can cause.

Right.

So were quite lucky that… neither of them

They’ve had their hearts checked?

They’ve had their hearts, well… baby’s had her heart checked; were just waiting for dad to have his checked. But theres no… major worry for him at this stage.

So can it affect the heart valves or?

Yeah.

Is that what it does?

Yeah can affect quite a bit of your heart. And… I don’t really know the heart side of it because weve not come across it yet, so… yeah.

OK so theres quite a few things to be aware of?

Yeah a lot of things to be [laughs] a lot of things to be aware of, so yeah.

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.