When providing postoperative care for the cleft lip The nurse should position the child in?

So the first thing is, “Oh he looks completely different, that’s really weird.”

Yeah how did that, was that a good feeling or did you, was it strange?

Well I guess it wasn’t a good feeling. It was a kind of… you missed his because when he had his split lip he had this amazingly broad smile when he smiled. And, you know, you kind of went, “Oh, you know, you’re sort of… not going to see that again,” you know.

Oh so yeah.

So, you know, there was a little sort of… which is, you know… absolutely I wouldn’t have wanted to keep it [laughs]. You know, I didn’t have any regrets. But his, so both his face looked different and he sounded different, the sounds that he made were different.

Yeah sure, yeah.

And so you kind of had to go, “Oh, you know, this is a new… you to get used to again.”

Yeah that’s interesting.

Yeah so

OK so did you have any perceptions of the treatment, you know, prior to that? You know, did it fall in line with your expectations, would you say?

I think so yes. I mean because, you know, with the lip… he had a, it was kind of there was a lot there and it was, it was like it, like it, literally like it had been cut. So you could kind of see how you would stick it back together, and that is kind of what they did. So you sort of went, “Yeah.”

They, there was some talk, one of his nostrils on the same side as his cleft is slightly flattened, and still is. And… they were… I think we probably had a slightly, were hopeful maybe that that would be made better by this, this lip repair, and it was… quite limited, the difference it made to that.

Sure hmm.

So you could sort of, you know, it’s sort of about how visible the kind of abnormality is. And it is, you know, it is kind of visible. But… but I didn’t feel, I don’t know, it was a lot better, it was loads better and he was very happy. So, you know, he didn’t know anything about it, and he still doesn’t really [laughs].

I was just pleased he’d 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.

OK.

You couldn’t believe it. The minute she saw me she cried because it’s like she’s in pain and she wants mummy or daddy, and she cried and we gave her a cuddle.

Very brave.

Yeah she’s really, really brave. And they’d never seen anything like it: she drank more than she’d ever drank from her bottle within 45 minutes of this operation, of coming round.

Gosh.

And they couldn’t believe it, she just drank, drank, drank, drank.

It’s incredible, isn’t it?

Yeah it was like a different child. You couldn’t believe how quickly it had changed. She only stayed in one night. The morphine made her quite ill overnight, but the minute they took it off she was fine, and we went home the next day. So it was a lot better than I’d been building up to in my mind. Because you think, you get told, because of the PRS, there’s a high risk they’re going to need to go to the HDU.

Yeah so there’s a high risk of complications I imagine.

It’s because of the airway, yeah, the airway gets blocked and swollen so it becomes difficult for them to breathe again. But she had... nothing; she was absolutely fine.

And what was the aftercare like once you got home? How did you manage?

You get given all the leaflets when you’re in hospital: what they can eat, what they can’t eat, and then after X amount of weeks that changes and then you can introduce different foods, so you’ve got all that. Then the cleft nurse comes out to check and see how it’s healing. They’re always at the end of the phone, so if I had any questions or concerns: pick up the phone and ring her straight away and she comes, she’s usually there within the next day or two. If it’s urgent she’ll try and make time to come straight away or go to the hospital. So it was brilliant. After the operation you don’t see the cleft nurse very much though.

OK yeah.

I think it’s... I can’t remember, a few months after you go up and you see everybody again, in [place name] was where we went. And the surgeon checks it, checks that no holes have formed in it, checks that it’s working, “Are you happy? Do you have any questions?” And then it’s... that’s it really you’re passed on.

Yeah sure.

…and I... and I cuddled him and I started, because he wasn’t able to see very well, to see me very well, and I started to sing, to sing in his very, I even started to sing, and he, I am not sure if he I think he wasn’t seeing me, he was hearing me actually, my song, and he stopped, he stopped crying.

He recognised your voice?

Yeah he recognised my voice, yeah.

And that was comforting?

Yeah, yeah, yeah, yeah they said, “Ah look now he stopped.” Because the nurses were trying to... to soothe him but... but he was crying and crying. And it was... just... this was maybe the most difficult point, because you are seeing him covered in... not covered, but with a little bit of blood, everything here is sore, he’s under medications, under drugs, and this was maybe the most awful moment.

OK so there is a lot of intervention at that point, isn’t there?

Yeah his arms, you know, they are putting, I don’t know what’s…

The cannula, is it?

Yeah, yeah, yeah this was maybe the most difficult moment. And we went in the in the room, and they said, “If you want to breastfeed, breastfeed him. But be careful because of the scar.”

OK so he was able to do that straight away?

Yeah after maybe half an hour because he was very hungry. Because we were instructed to not giving him food or water, I don’t remember, but maybe, maybe five at least it was around five hours before the surgery.

Yeah.

So he was... and after he had the surgery.

He must have been very hungry?

Yeah he was starving.

Yeah.

So maybe half an hour after the surgery I put him on the breast and he succeeded to breastfeed a little bit, but it was very, very, very... difficult. But thank God they are recovering very quickly, the babies, just for a few days.

Yeah.

He became really, really better.

So in the way he looked, in the way he behaved or both?

Yeah, yeah, yeah just oh I think this first day and this first night were very difficult because it was very painful for him, so he was under painkillers.

They were giving him painkillers every few hours because it’s surgery, you know, it’s very painful. But I think we continued to give him painkillers just for another day, one another day, and after that he was fine, he was fine, he managed very, very well. He’s very, very brave in my opinion, because he recovered really well, and we were sent home just after two days after the surgery I think.

Oh OK.

Millie: And [laughs].

Could you explain why they splint the arms?

Millie: It’s so that they can’t get at the mouth and so he can’t pull at his glue and things like that.

Michael: Stitches.

Millie: And his arms were like that, weren’t they?

Michael: Yeah you’d have thought he wanted a cuddle all the time.

Millie: And people were sort of like, you know, “Oh what’s wrong with his arms?” And I just got fed up one day, didn’t I?

Michael: Yeah, you know, because it’s every five minutes, “Oh what’s up with his arms?”

Millie: Yeah and I told someone [laughs] I’d broke his arms, didn’t I?

Michael: Yeah cos they wouldn’t shut up.

Millie: This bloke was like, “What’s wrong with them?” I said, “Oh I broke his arms; he wouldn’t shut up.” And a lot of mums have had that, haven’t they? Somebody, one of the other mums had... in Marks & Spencer’s, a woman coming up saying her son had a bogie on his face, and it wasn’t, it was his glue, because it goes black, doesn’t it?

Michael: Yeah.

Millie: And they’re like Hitler? [laughs] with all this black glue.

So it looks like a black moustache?

Michael: Yeah it’s pretty much half of it.

So do they use glue instead of stitches, is that what they do?

Michael: It’s so they can’t pick the stitches, if he does get hold of them.

Oh it covers the stitches?

Millie: Yeah, but that’s funny, isn’t it?

Michael: It seems to just attract dirt there so it turns black.  But as it starts peeling away it turns into like a little square Hitler tache.

Millie: But we have people, yeah, we had a lot of people saying, “Oh what’s he done to his arms?” and things like that. And I was like, “He’s had an operation.” They didn’t even notice his mouth, did they? They were more bothered about this tiny baby with his arms out like that; couldn’t get in his pram and things and that was a... that was, that was funny. I think because of the relief of, you know, all his operation, being pent up, and the relief, we just found that funny, didn’t we?

Michael: Yeah.

Millie: Because he could pull his splints off, couldn’t he?

Michael: Yeah he’s sussed that one quick.

Millie: Yeah he was really clever: he just used to put his arm and pull his arms out. And the amount of times we found him sat there like with his splints off, chewing his hand, and things like that, didn’t we?

Michael: Yeah.

Millie: Yeah it was funny after that. After that it was so much relief, wasn’t it?

And I just... I knew how to deal with it a lot better because I’d been through it before, I knew the hospital... I knew the surgeon... I felt a lot more comfortable and a lot more able to deal with it.

So was it the same surgeon?

The same surgeon, yeah, all three times he’s had his operations he’s had the same surgeon.

I sort of, I knew what he was going to be like when he... came round. And I knew, like I remember in his first operation saying, “What if he don’t eat again? What if he don’t drink again?” [laughs] and [laughs] the nurse said to me like, “He’s learnt to eat and drink with this gap in his lip, so he’s obviously going to learn how to eat and drink when he’s got this full lip that we have: like we can do it so there’s no reason why he can’t do it.”

Yeah.

...So obviously [laughs] with the second operation I just had it in my head, “I know, no matter how long it takes, he’s going to eat again and he’s going to drink again.” So I weren’t so [laughs] panicky.

OK.

So when I walked in I could hear a baby crying but I didn’t know it was my daughter.

You didn’t recognise her?

Didn’t recognise her. So when I went to find her, she was the only baby crying and I went, “Oh she’s changed.” I mean visually she hadn’t changed but... her cry was completely different: it was a lot deeper.

OK that’s interesting yeah.

Yeah so now if I meet any other mothers who are having a palate operation I will say, “Just, just be prepared that the cry will change.”

Hmm yeah I hadn’t heard that before.

Hmm.

So yeah, OK. So what was that post-op period like? You mentioned that they need to eat yoghurt and stuff. How long is it, because at six months would your baby have been weaned at all?

She, I’d started to wean her. It was very, very difficult, very messy. I could get some soft food into her, and I’d taken yoghurt with me, and she was taking pureed fruit and vegetables. But because her mouth was sore she didn’t want really anything in her mouth. So I for the first, I think day and a half, I fed her with a free flowing cup. Because rather than squeezing the liquid into her I could actually just drip it in, which was much nicer for her. And eventually, I think two, three days later she was back onto her squeezy bottles, which didn’t last long, probably about a week. And then she came off painkillers then as well, and then she was back onto her free flowing cup.

OK so within a couple of weeks?

Yeah, yeah she, yeah, she bounced back quite quickly. But then I also think hers was only the soft palate as well; it wasn’t the full hard palate from front to back. It was only a small area.

Yeah OK.

And she liked yoghurt.

Yeah that’s nice. That’s a good plan.

Yeah [laughs] it was nice and cold on her mouth where it was sore.

Yeah sure.

And then the next morning he seemed to be OK. It took a, it took a day or so actually, saying that, to get fully back to normal, as in get over the operation and stop, you know.

But I think that was a more, more difficult bit, was the bit after the operation, not the bit before. The bit before was just... you’re nervous and anxious and everything else. And the bit afterwards where you can kind of see your little boy, and he’s a bit uncomfortable and, you know, in a bit of pain and things. But then the second operation, when he was ... nine months, or six months, I don’t know, I think it was nine months, he... that was excellent. I mean I was getting really... again nervous and anxious about it all, and then he came out of it fine. And then he was sort of... he perked up straight away, it was not a problem. Which I was quite... because it’s supposed to be worse, the second one.

OK.

The second one is the one where they do the palate.