In our area we have three hospitals that we can choose from.

And the hospital that I had [son’s name] in is the hospital that weve chosen to have… the orthodontic care….But another hospital that’s in our area is the hospital that provides the speech and language therapy and the hearing tests.

And then the operations come from a completely different hospital in a completely different area. So…I don’t know whether in the future that will cause problems on the basis that were not using the same orthodontist as maybe other people in this area are using.

Oh yeah, it’s fine for the local ones, not a problem. But the one that’s quite far away, it’s a good couple of hours.

OK.

And when most of the appointments seem to be at 9 o’clock in the morning it’s yeah, it can be a bit of a rush [laughs].

That must be quite difficult, yeah.

Yeah… but I think most people end up having to travel quite far, don’t they? I think theres only really certain centres that do…

Yeah [laughs] yeah, loves socialising.

Is he at a preschool group?

Yeah hes at playgroup, yeah.

Yeah.

Hes been there for just over a year now. Yeah hes fine, he loves it. No, hes just… it’s not an issue for him. I don’t even think… well they say that children under 5 don’t notice things like that anyway, however, it’s never come up in conversation, I don’t even know if hes…

So other children haven’t noticed?

aware yeah. Well I don’t… as far as… adults notice obviously and… people comment on it, in the fact that it’s because they already knew and they say you couldn’t even tell now that hed had the cleft lip.

How do you feel when other people comment? Have you had any experiences of where you’ve been upset at all or?

[laughs] Before [son’s name] had his operation my friend had twins not long before I had him and so we were on maternity leave at the same time, so we used to go shopping and things, and get out and about and do stuff. And there was one day where we bumped into some workmates of hers.

Right.

And they were all cooing over the twins, as you do, [laughs] and then they kind of looked into my pram, saw [son’s name], and kind of went, Oh lovely, and then carried on with their conversation. And that hurt a little.

Hmm sure yeah.

But it’s understandable, because you’re not expecting it, to be fair, you know.

And this was before he had his op?

That was before he had his op. And there would be times where wed be in a shop and the lady on the till would be, Oh twins, lovely, and then kind of not make any comment whatsoever on my child.

But, you know, like I say, you can understand it. It’s not nice, but you can understand it, because people aren’t expecting it.

What would you say was the level of awareness then amongst the sort of environment that you live in?

Yeah well we were quite lucky because he was only three months old. The first three months we… spent a lot of time with friends and family, so they were all aware of the situation and, you know, and they were all

So it was quite protected, in a way?

Yeah, yeah definitely so it wasn’t really an issue, I mean apart from little things like that that, you know, would sting but… I couldn’t dwell on it really. Though having said that, after what happened later on, [laughs] maybe I did dwell on it, I just didn’t realise I was. But

That’s true.

Yeah [laughs] but, yeah, we had quite positive feedback. There were no friends that made any comments, or if they did they didn’t do it to our faces and we never heard about it. But I’d be surprised. And obviously our families loved him because, you know… hes still our baby, it doesn’t matter what he looks like.

I kind of had a bit of postnatal depression at that point, and I was having panic attacks and anxiety.

OK right.

And I think that was because I’d just kind of pushed everything to the side and just kept pushing it and just kept pushing it, and we had a lot of things going on at the time within our family.

So there was delayed reaction perhaps?

Yeah I think so, yeah, I really do think so. But it was my way of coping, and then in the end my head said, You can’t keep doing this, so… and then it dealt with it the way that it wanted to really.

And did you get any professional help around that time?

Yeah

Could you explain a bit about that?

I went on antidepressants to stop the panic attacks. And then… was still having the… the kind of the thoughts of impending doom that you get with panic attacks, so then I started seeing a counsellor. And after about five months of counselling, altogether it lasted for about… a year and three months I think.

And was this provided as part of the cleft service or was it something you did?

No, no, this was what I did through my GP.

So you sorted it yourself through your GP?

Yeah, yeah.

Because I understand, I understand some

I mean I wouldn’t even know if we could.

Because some teams have psychologists, and I just wondered if you had access to the psychology services?

No, no. Well maybe if wed asked, maybe, but, like I say, we only met her.

But were they aware?

No they wouldn’t have been aware.

Right.

…But we only met her when I was pregnant, quite heavily pregnant, and then we didn’t see her again, which was the only issue I had with the hospital actually, on the basis that we had a couple of appointments that they’d sent us a letter through to, we went all the way to the hospital, because it’s not close, to get there for these appointments, and a couple of times wed turn up and they’d say, Oh no, you shouldn’t be here, you should be at a different hospital.

Right.

Our local hospital, [laughs] which is just typical, because they do clinics at the, the local hospital as well. And I think one of those times was the time that we were supposed to be meeting the psychologist.

OK.

So… that, I would say, was probably the only real negative from our experience from the hospital. But, yeah, I wouldn’t, I don’t think I would have even asked. Because it was so, so long after… any of the surgeries that wed had, I don’t think I even would have thought to have gone to them really for any help.

OK.

Though maybe that might have been the way to go. But yeah, so it lasted about a year and three months altogether.

OK so

Which is quite a long time.

quite a long time, yeah hmm.

Yeah, but I didn’t help myself in the fact I tried to… tell myself everything was OK, because I wasn’t having the panic attacks, I was telling myself that everything was OK, but actually I needed the counselling just to kind of… sort my head out [laughs].

He started off…with nothing until he was three months old, and then he had the first operation for the lip.

And he had a collapsed nostril as well, so that all had to be brought together.

And… that didn’t take very long for him to recover at all, we were really surprised. Obviously he was uncomfortable and it wasn’t very nice for him, but within a couple of days it was like he hadn’t even had the operation.

Oh really? Hmm.

Yeah he coped really, really well. But

How did you feel about that? How did it feel handing your son over?

I couldn’t go downstairs with the baby; Paul took him.

OK.

…I couldn’t do it because I didn’t want to see that whole thing; that was just too much really.

Yeah sure.

…It was upsetting definitely… however, I don’t know, it’s hard isn’t it? Because you’re, you want them to have the operation because you want them… to be normal [laughs] whatever normal is. But you don’t know how they’re going to cope, you don’t know whether or not they’re going to have a reaction to the anaesthetic, all that sort of stuff, it’s all new. And I’ve never had a… a big operation myself so, you know, I couldn’t even relate to it, I wouldn’t know what it’s like to have to be in that position.

So how old was he then?

He was three months.

Three months yeah.

…I think because we had the paediatrician in the family, it was kind of she was our support in terms of, you know, shed tell us that hes not going to remember the operation, hes not going to know the pain, hes not going to… it’s, you know, you just…

Yeah.

Once it’s done, it’s done, and you’ll be glad that it’s been done, you know, it… there is a reason for it, as such. Even though it wasn’t like life or death or anything, you know, there was an outcome to it that was going to be worth it.

Sure

So… I have to say I tried to just, the whole way through, I just tried to be a bit detached, not from him, but from the situation, because that was the way that I coped.

So when he had the three month operation, how did it feel when you saw your son for the first time after the operation?

I was just pleased hed come through the operation really. Yeah I… I’ve never heard a baby whimper the way that he whimpered. It was…

Oh right.

yeah, it wasn’t very nice at all.

But understandable. And

Did you think he was in pain or distress?

I think he was uncomfortable. Because he was having ibuprofen and paracetamol quite regularly, and… they gave him something else as well, but I think that was to do with infection control… but, yeah, he was obviously uncomfortable. But, like I say, within a couple of days it was… he was fine. It was really that first day that he… wasn’t well, and you could tell he wasn’t well.

Yeah sure.

And then after that he just seemed to… get better and better really. But it’s heart-breaking. It’s your baby: you don’t want them to be in pain.

But, like I say, I tried as much as I could to just be… well, you know, [laughs] this is the way it is and now we just have to move forward.

But the only other help hes really had is speech and language therapy, and we have regular hearing tests. And then we met with the surgeon, again for him to assess [son’s name].

So in terms of his hearing, is that affected at all?

We… the first few times, because we were having them every three months at one point, the first few times they were concerned that he might have glue ear, however, the last time we went they came to the conclusion that he didn’t have it at all and that actually he doesn’t need grommets or anything, which is good. Because we were worried about him having another operation, mainly on the basis that hes older now so hes going to be more aware of it.

Yeah sure.

So, yeah, were just kind of… were kind of, weve hit a plateau at the moment until we have the next operation, which is probably when hes about 8 or 9.

OK and would that be another repair of the palate?

It’s the bone graft for his gum.

No weve been really lucky. He there are some things that he can’t pronounce properly, but I think that’s just normal really for his age.

Yeah.

The speech and language therapist seems to be very happy with him. The last time we saw her I think was about a year ago. Were due a session with her in January.

OK great.

So that’s how happy she is with what’s happening. I think because he was the only child, and I think because he was the only grandchild as well, people would talk to him a lot.

So there was a lot of interaction.

Yeah and he… he was making the right noises fairly quickly. And obviously there were things that we needed to look out for, like my dad taught him how to growl, and then when we went to go and see the speech and language therapist she said, Don’t do that with him, [laughs] so, you know, had we have known we wouldn’t even have started it. However, it wasn’t an issue because he hadn’t been doing it for very long, and we just stopped doing it and then he stopped doing it. But, so it may have been a bit helpful to have known beforehand what things to do or not to do with him, but luckily for us it didn’t… really affect him.

But I think it’s just we were aware that he might have speech issues so we really… tried to help him with that and do what we could. Having now had a second baby [laughs] had he have been the second baby, I’m not sure we would have had as much time to be able to do that. So you know, we were just lucky that it was our first and we could spend the time that we needed to with him.

We did have a look at the CLAPA website. And we had to order the bottles and teats and things from there.

And I had a look at the forums and… and things like that, which is where we got a lot of the information from, so like from other parents, I looked on that part of it.

So, yeah, but our cleft nurse, we were in regular contact with her during my pregnancy as well. There was a bit of concern about the Christmas period, because he was due on the 23rd December.

Oh OK.

And… then there would just be a nurse on call, so there was a bit of… yeah, a bit of an issue about whether or not anybody would actually be coming out, able to come and see us straight away. But he was born on the 2nd January, and it was the next day that they came to see us to make sure that he was feeding OK.

OK that’s great.

Luckily the hospital… that I had him… was a hospital that had previously done the surgery so a lot of the nurses that were there were aware of cleft children anyway, so that was quite nice.

OK.

So it means that there was a bit of a bit extra help from people that knew.

But… no it… I think as well because you’re squeezing the bottles to get the milk to go straight down the back of his throat, it’s kind of it’s like you know that you’re doing something really… special for them, because they can’t do it themselves. So, yeah, I don’t think that was really an issue.

OK so you saw a positive side of it?

Yeah. But we had, you know, we had like 20 odd weeks to [laughs] get used to it really, so we were lucky, really lucky in that respect. I know, like from having looked at the forums and things, I know a lot of people struggled. But I think…

So

Sorry, go on.

So what specialist help did you get with feeding then? Because I think you said that?

Nothing [laughs] really.

OK.

The cleft nurse didn’t come until the day after, so wed already had to feed the baby.

OK so you were literally hands on yourself?

Yeah [laughs] just, There you go, theres a bottle, theres the baby, just do it.

OK so how did you feel about that?

Yeah fine. I was a bit upset on the day that the cleft nurse couldn’t come.

But luckily for me, he fed really well, he took to it straight away. So it wasn’t an issue.

Yeah.

You might find this a bit of a boring case actually because [laughs] we were quite straightforward, we were really lucky actually.

No, we want positive stories, we want positive stories.

So, but yeah, we were really lucky. I don’t know whether we were just lucky with our baby or whether we were lucky with the support that we had, I don’t know. But everything seemed to be fairly straightforward for us, which was nice.