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Christie

Age at interview: 41
Brief Outline: Christie works as University Research Associate and has an interest in consultations in primary care. Christies’s oldest son was born with a unilateral cleft lip and palate which was diagnosed at a routine 20 week scan when Christie was pregnant.
Background: Christie is a University Research Associate. Christie is White British and married with 2 sons aged 5 and 2 years.

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Christie works as University Research Associate and has an interest in consultations in primary care. Christie's oldest son was born with a unilateral cleft lip and palate which was diagnosed at a routine 20 week scan when Christie was pregnant. When he was born it was discovered that he also had a cleft palate, but otherwise he was a healthy baby. Hearing the diagnosis from the sonographer was very upsetting and at that time Christie did not know much about cleft lip and palate. Christie looked it up on the Internet and looked at endless pictures of children with cleft lips, which was very upsetting and quite difficult. Shortly after the diagnosis Christie and her husband had a visit from the cleft nurse who showed her ‘before and after’ pictures of babies that had undergone lip repair surgery. Seeing the pictures helped Christie and her husband to gain a better understanding of what to expect and having a pre-natal diagnosis gave them time to adjust and prepare for the treatment ahead.

When Christie's son was born feeding was the most pressing challenge as she wanted to breastfeed her son. Christie and her husband found that both nurses and midwifes were not well informed or experienced with regard to specialist feeding bottles for babies born with cleft lip and/or palate and this was very frustrating, in addition expressing breast milk was exhausting.

Christie's son had his lip repaired at 3 months in the North of England where the family were living at this time. He has had further surgery to repair his palate although an initial operation was not successful. He also receives speech and language therapy to improve his speech delivery as he finds certain sounds difficult to pronounce. 

Christie’s son currently attends a local infants school where he appears to make friends easily and does not appear to be self-conscious of his cleft lip or his speech.
 

Christie was reassured by a visit from the Clinical Nurse Specialist (CNS) where she was guided through the information available online.

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The cleft nurse came at around teatime. It was around, [name] got home, and he was at home when the cleft nurse came. And she came and she kind of… gave us a lot more information and kind of… sort of talked us through a bit more what to expect. And she also had… so when I’m looking up online I see lots of children with cleft lips, looking sort of quite scary some of it, and what she had was before and after pictures. She had, “Look, here it is, child born with cleft lip, looks pretty scary, this is what they look like three months later.” I’m like, “Oh well that’s kind of OK.” And that was really helpful kind of going actually, you know, that’s… can be fixed. Fixed, is that the right way of putting it? Or… yes, the lip can be repaired. And she sort of talked us through, yeah, a bit more what to expect.

So you talked about this and they gave you more information, what was the quality of the information like, looking back now did it prepare you well, would you say, for the birth of your child?

Hmm yes I think so. I think, from that point, I felt quite supported and like I had… a lot of… so I had a… better understanding of what it meant for the child in terms of… sort of… what challenges it might involve and how you might be able to cope with it basically. So it kind of, it turned it into more of a kind of a known challenge that, and you know, and ways of coping. So that was as far as I remember.
 

Christie’s friends knew she was having a scan and they were phoning up to ask how it went. Christie was unsure about having to tell people there was a potential problem as she did not see the cleft as a defining feature of her son.

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When you’re pregnant you’re kind of public property as well, people talk about it all the time, people sort of, people, you know, strangers in the street all talk to you about your baby. And I would sort of, you know, I would sort of judge really whether it was, whether… yeah, whether it seemed appropriate to mention or not really, or whether it was just, I don’t know, because it wasn’t like it was the only thing that was our experience of having this child. There was all of the usual other things, like he was enormous, and he was 10, 10 when he was born.

So did you feel like it kind of overshadowed other aspects of your child, did you feel like people were focusing on the cleft thing too much?

To be honest, I can’t remember.

No OK.

I didn’t really feel that way. It was just another… characteristic. I suppose when you’re having a child you’re kind of… during the pregnancy you’re sort of learning more about them, even though it’s not very much, not that you have much information, but you kind of start to develop a picture.

Yeah sure.

And so the cleft as… the cleft, him being enormous, him being a boy, all of that is part of developing a notion of his, who he is.
 

Christie experienced conflicting advice from her midwives and maternity nurses were pushing for natural breastfeeding despite the clear difficulties her baby with a cleft lip and palate had with feeding.

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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, he’s not going to be able to feed on the breast, you know, but if you express and use the squeezy bottles he’ll 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 there’s 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.
 

Christie found she was expressing more milk than her son could drink and looked for advice on the internet about storage for future use.

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OK perhaps you could tell me a bit more about that, because I’m interested to find out people’s 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 there’s 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, we’re 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 there’s 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.”
 

Christie was surprised when she saw her son following his lip closure and needed time to adjust to his new smile.

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So following when he, when you first saw your child after the operation, how did that feel then? Can you remember, can you remember that moment?

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].
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