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.

And do you mind if I ask you from the perspective as a father using the bottles, how did that feel for you?

Andy: I think probably for me… you know, obviously if Diane had breastfed then I probably wouldn’t have had that kind of, you know, hands-on, you know, approach kind of all the, all the time. But the fact that I could share the kind of, the responsibility, so we took it in turns at night and things like that, probably made it a lot easier for, for, you know, certainly for you, Diane.

Diane: Yeah.

Andy: And you know, and then it gave me the time as well to, you know, to do it as well and help. So, yeah, it was probably…

So do you think it made a difficult situation

Andy: Yeah.

perhaps easier?

Andy: I think easier because, as I said, you know, otherwise, like I said, I’d have felt as though I wasn’t sharing the, you know, sort of the burden of feeding all the time. So, you know, I think that kind of… we, we shared it out equally.

Diane: That was a positive thing actually, wasn’t it really, [laughs] sharing him out?

Andy: [laughs] Yeah otherwise, yeah, I think you’d have made me awake anyway, and not asleep, [laughs] yeah.

But as a father, did you feel that helped with the bonding side of things?

Andy: I think so. I think, yeah, personally I think, yeah definitely. Because, you know, you want to do that kind of thing as a father, and if you feel as though you can’t kind of help or you’re kind of, you know, [laughs] you don’t… you don’t kind of get that opportunity really, do you? So, yeah, for me, you know, I think it was, it was good.

I mean I’m a very hands-on dad, so I mean I get straight in there and doing stuff. I mean from the off when we came away from hospital wed been given these special bottles, but obviously she still had a tube in her nose. And so what would happen is they… would allow an hour for feeding, which is what you’d allow for any other baby as well who didn’t have a cleft palate. But they didn’t feed in the bottle, you’d just give a little bit in the bottle and be squeezing it in, because they can’t do that suction motion. And then you’d finish off with a with the tube. But yeah I mean she was… as I say, yeah, I mean we, we both got stuck in with that. I mean it was quite troublesome because every three hours you’d be sort of religiously doing this for, for well I mean ever since she was born. So I mean it’s been like, if you go out somewhere you’re thinking, Oh weve got to make sure were, were ready, weve got to be, because we know sort of feeding takes a long time, and all this stuff. But yeah weve just learned to kind of just add it into the routine and think, Well OK. We know if we go on holiday or something, or a long journey, we think, OK well well have to picture in this time, one o’clock or whatever, were going to stop for an hour and

Tamsin: The cleft nurse team come in within 24 hours to teach you how to use the squeezy bottles except… the midwives on maternity units, they’re very cautious of doing it. I’m not sure, I’m not sure why. Some people say they’re scared of drowning or they’re scared of not feeding the baby enough.

Yeah.

Tamsin: Or whatever happens, anyway they’re quite cautious of not having the guidance from the cleft service to do it. So when we got back up onto the ward about five hours… at about five hours old, he was, wasn’t he?

Andrew: Hmm.

Tamsin: And the midwife took him and was going to syringe feed him. And he… didn’t like it so he went… he went a bit blue, didn’t he?

Andrew: Yeah.

Right.

Tamsin: And he had a couple of blue episodes. So they thought given we, they had this little baby with a cleft lip, with a couple of other unusual features as well, some of which we were aware of, some of which had been discounted through our scans and then crept back in when he was born, and so they took him off to SCBU (Special Care Baby Unit) to make sure he was OK, and to get this feeding started. At which point they took him and, for two and a half days

Andrew: Hmm.

Tamsin: and they put him on a feeding tube. So, and he was born on a Thursday, yeah, on a Thursday, so then we had, so basically had the weekend to get going. So that was his birth really. And then after two and a half days he came back onto the ward with me. At our hospital they have a transitional care ward, which is quite new in our hospital but it’s for mothers who have babies who may have extra needs or mothers who have had a particularly complicated labour or something like that. So we went on there because [son’s name] was, had a cleft lip and palate, he was on a feeding tube, so he was being syringe fed down the tube, and we had to… squeeze the bottle as well, so we needed a little bit more care than the general ward as well.

OK and what was the level of awareness on the wards with the staff?

Tamsin: Well they were

Andrew: By that stage the cleft lip nurse had arrived and given instructions to the midwives, what

Oh OK.

Tamsin: They were always very confident all the time. They were very used to having to help do a nasal gastric tube so… they used to do it, they would do it regularly anyway.

OK.

Tamsin: And the bottle squeezing was actually just up to us, wasn’t it?

Andrew: Hmm.

Tamsin: So I mean I’m sure they’d have stepped in if they needed to.

Did you feel confident with doing that?

Tamsin: I think we just… just got on with it, didn’t we? We had to feed our baby so… and this is the way we were told to, and

Andrew: The NG tube kind of took the whole pressure away from

Tamsin: How much to get it.

Andrew: getting that bottle [laughs]. In a way, you don’t want your, your baby to have to have the tube, but having that tube in just took all the… the first, he had it in for three weeks, and he came back home, when he came back home there was no pressure if he didn’t drink the bottle, because no matter what he didn’t drink

Tamsin: He would be fed.

Andrew: poured it into the tube and it was [laughs] done.

I was asked by a midwife about whether I was going to breastfeed. You know, she kind of looked at me after I’d explained everything to her, and shown her a squeezy bottle, and explained what was going to happen over the next few months, and how the muscles in the mouth were formed and… and she still looked at me and at the end of that she kind of said, Oh so you’re not going to try and breastfeed at all? And I just thought, I’m… I’m not sure that you’ve listened to a word that I’ve said. And, you know, these people are there to hold peoples hands through a really uncertain time anyway, but when they’re putting pressure onto somebody to do something that’s physically impossible [laughs] it’s pretty, you know, it’s not ideal really.

One of the things with the hospital was that so because he had a cleft palate he wasn’t going to be able to feed on the breast, he couldn’t get enough suction. And the midwives at the hospital, who weren’t cleft specialist, they really wanted me to try with having him feeding on the breast, and I was sort of hand expressing into his mouth, which was just pants frankly, did not work, it was ridiculously difficult. And the cleft nurse, the specialist cleft nurse turned up with a hand pump and a big industrial kind of breast pump. And she was the one who said, Look, you know, this is not going to work, hes not going to be able to feed on the breast, you know, but if you express and use the squeezy bottles hell be able to, you know, you’ll be able to do it that way. And so, and that did work. But I felt that they’d kept me in hospital maybe an extra night, or even two. I mean I was in hospital sort of three or, three or four days with him, whereas with [older son’s name] it was barely 12 hours [laughs].

Really?

Yeah booted us out the door. So and I felt that there was not really out and out disagreement but contradictions in the advice I was getting from the specialist cleft nurse and the sort of maternity nurses, that the maternity nurses were pushing for to try natural breastfeeding.

Oh right so

Which was just never going to work. And it was the cleft nurse, and I was sort of, and I because they kind of saw me separately, I was the one who had to say to the maternity nurses, Look, you know, this system is working. This is not going to work.

So did you feel the maternity nurses were didn’t have the right knowledge or

Yes.

didn’t have the right training perhaps?

Yeah and I, you know, I think that they, all of their stuff is around trying to support mothers to do breast, natural breastfeeding, feeding on the breast and they were pushing that line. And I think that it’s also theres some, I had heard this as well, that sometimes it’s possible for cleft babies to feed on the breast, and they were kind of, you know, hoping that you know, all best intentions, just yeah, not helpful. And I felt that they kept me in longer because they were trying to get, make sure, trying to make sure the feeding was established properly for the baby’s sake, right. But that the breastfeeding business was a right pain, it was very difficult to sleep there, I was completely exhausted, I hadn’t had any good sleep at all and I really needed to get home and get down to organising a routine so I could express and feed him myself.

OK perhaps you could tell me a bit more about that, because I’m interested to find out peoples experiences of using online information particularly.

It’s not, yeah that’s a bit unfair. So with the cleft, specific cleft related stuff, so what it was, and this is true of both the cleft related stuff and the sort of expressing milk stuff, was that theres a great variety of experience, and so you’re kind of searching through a lot of experiences, that don’t sound like you at all, for the ones that do sound like you. So I had a think with the expressing. So in the first sort of six weeks I’m expressing every three hours, I mean and through the night as well. And it was extremely difficult because I was not getting enough sleep. I mean I was doing, you know, something between 3-5 hours in 24, usually in, you know you know, 1-2, 1, 2, 3 hour bits, and it was not enough. And I was, around the sort of six week mark I was thinking, you know, This is, I can’t, this, I cannot go on, but I’m producing vast amounts of milk, were freezing the stuff, right. Can I drop the night feeds and kind of just express during the day, and feed him stuff that’s sort of, you know, so, and theres all that stuff about the morning milk being different from the evening milk, and he wouldn’t necessarily be getting morning milk in the morning and evening milk in the evening if I’m, you know, expressing and feeding him different times. So, and I was trying to find out about that. And all the advice I had was, is that that around the six weeks that your production drops off dramatically, and if you want to keep being able to produce enough milk to feed your baby you’ve got to keep up expressing every, every few hours. And so I did that, [laughs] and we filled the freezer, right. And I did it for another two weeks. And I, and I went, I said, I can’t do it, I can’t do it, I’m not getting anything like enough sleep, it’s just killing me.

Andrew: The expressing was difficult. And you don’t, I don’t think you realise the emotional strain that you know, the whole bit of having the cleft baby, and especially if it ends up going into SCBU, and being parted from Tamsin, in expressing, Tamsin worked a huge amount to try and get it going but by the end of the month, and we had both parents come at different times to support, and I was off for a couple of weeks, but just decided that by the time we were all having to go back to work, and Tamsin was going to be at home alone, that the expressing just practically wasn’t going to be continuing, because Tamsin was not spending any time with the baby.

Sure.

Andrew: Because, you know, all she was doing was feeding, [laughs] feeding the baby.

Tamsin: Feeding and sleeping [laughs].

Andrew: Feeding and sleeping, feeding and sleeping, and you just went… it would have been lovely if that had continued, but practically speaking you, you have to get to a point where you go, we ended up going to formula because, for the overall welfare of both Tamsin and [son’s name], it was by far the better… thing.

Mark: The cleft team, we spoke to them and we said that he was not feeding very well, and wed heard there was another type of bottles.

Becky: Yeah.

Mark: And the one cleft nurse went out of her way

Becky: Yeah.

Mark: and she actually came up and gave us one of the bottles to try out

Becky: To try to just

Mark: which was a Haberman bottle, which is a longer teat.

How do you spell that?

Becky: Haber, Haberman feeder, yeah, it’s a fantastic, it was.

Mark: It was more expensive but worth it.

Becky: Yeah we just found it was.

Mark: Because that was when

Becky: Yeah.

Mark: he struggled to feed, didn’t he? He was up all the time because basically he was taking some feed in, falling asleep from tiredness, waking up, having a feed again, it was constant. And these Haberman’s have got like an end you squeeze, so you squeeze the milk into the mouth.

Becky: Hmm.

Mark: And weve seen unbelievable differences: putting weight on, starting to sleep.

Becky: Yeah he went from below the 25th percentile I think hes above the 75th now, so that was just really, really useful. Because it was just, you know, this is the ones that were provided by CLAPA, they were provided free but, you know, it’s individuals, doesn’t suit everybody, but theres alternatives, wasn’t there?

Mark: But they brought them straight up didn’t they.

Becky: Yeah.

Mark: and we asked them and they said, Weve only got one, you can try it and if you like it you’ll have to buy some. And luckily enough

Becky: Yeah.

Mark: the place we bought them from was only up the road half an hour, wasn’t it?

Becky: Yeah so we were able to buy them.

I remember some points it would take me nearly an hour to feed him about four ounces, and that’s not a lot of milk. A normal baby would drink that in… not even five minutes [laughs] probably.

Really?

And it would take me about an hour sometimes to get it down him because… it was just so hard. And it… sorry [laughs].

That’s alright, yeah.

It was hard as well… I felt like I couldn’t take him out. Because with a… say a normal child, you can kind of just lie them in your arm, stick a bottle in their mouth, whereas with… my little boy I had to… sit him up, I had to prop him up, and like my arm would ache where it took so long. So I’d have to… normally I’d have to like sit with my leg up like this, prop my arm against my leg. But like you can’t really sit like that in public, you know, when you’re out in a restaurant or something. People will look at you and be like, What’s she doing?

Yeah.

So I found it a bit hard to take him out. I took him to a shopping centre when he was… probably about two months, and it was just… it was a disaster. I ended up crying and bringing him home. Because I was in MacDonald’s trying to feed him, and I couldn’t… sit him up enough to feed him, and it was just horrible, it was an awful experience.

The feeding tube was horrible. I didn’t want to learn how to change it myself; I was terrified of it; it scared me. So though I’d feed her with it, I couldn’t pass it myself. And she learnt to sneeze it out, like she had this sneeze where she could force it out of her mouth. And so you had to take her to the hospital or get the community team to come out and change it, and if they were busy you were left hours not being able to feed the baby.

Hmm distressed baby?

Yeah she started refusing to drink even with the squeezy bottle. She just stopped drinking milk, so it literally was all NG tube feeding. And where she was sneezing it out, sometimes I was sat in hospital for three hours waiting for a nurse to change it. Sometimes that would be shed do it in the evening and you’d be left all night and having to wait for somebody in the morning to come out. So it was hard work because you don’t want a baby crying all night because you couldn’t feed them.

So it was a 24 hour operation?

Yeah. And then her dad learnt to do it. And after we split up, I’d have to ring him all the time, You need to come and change the tube; it’s fallen out again. And whatever he was doing, he was really good about it: hed come and do it. And then I think when she got to about seven or eight months I thought, No, this is getting silly. I’m going to have to do it myself. So they showed me how to pass it and everything, and I learnt to do that. It made life a lot easier. But she screamed and you had to tie her arms with blanket underneath her so she couldn’t whip it straight back out again: it was really difficult.

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.