Rebecca and Russell

Age at interview: 23

Brief Outline:

Rebecca and Russell’s first daughter was born with a cleft palate. The cleft palate was diagnosed when a midwife did a routine check as she was having difficulty breastfeeding. Their daughter has had an operation to repair the palate and is making good progress.

Background:

Rebecca and Russell are both White Caucasian, are married and work for their local authority. They have one daughter of 16 months who was born with a cleft palate.

More about me...

Rebecca and Russell are both White Caucasian, are married and work for their local authority. They have one daughter of 16 months who was born with a cleft palate. Their daughters’ cleft palate was discovered when a midwife did a routine check as she was having difficulty breastfeeding. The midwife put her finger in their daughters’ mouth and discovered a hole. The midwife called the doctors and they took her away to feed her through a tube. This was very upsetting for Rebecca as she wanted and expected to be with her child and be able to feed and change her nappy like any new mother would. Rebecca had to bottle feed her baby with specialist bottles as she could not breastfeed due to the hole in the palate.

Rebecca and Russell were not aware of the implications of having a child born with a cleft palate or that a child could have a cleft palate without a cleft lip. There had been no family history or other explanation for the cleft palate. Their daughters’ cleft palate was explained in more detail when the couple met with the specialist – a speech therapist. They were told that their daughter would need an operation at about 6 months old and would require a general anaesthetic to do this. Furthermore, they were told that their daughter may need orthodontic treatment and speech therapy in the future. Although the operation was successful it was more complex and took longer than they had expected. After the operation their daughter took a long time to settle and was sore - they had to feed their daughter with soft foods such as porridge and yoghurt. Their daughter is now 16 months old and eating and drinking well, she is also learning to speak. She is making very good progress and the medical team do not need to see her again till she is 3 and a half years old. However, their daughter is prone to ear infections which is common in children with cleft palate. 

Rebecca and Russell have been through a difficult time with their daughter and it has had an emotional impact on both of them. The couple have been fortunate to have had a good level of support from family, friends and professionals. They have also been very happy with the specialist cleft team and the co-ordination of their daughters care within the NHS.

Rebecca and Russell discovered that a local pharmacist believed that their daughter’s cleft was caused by Rebecca using drink and drugs during pregnancy.

Rebecca: Yeah. I mean you always get... I mean not in the people that were helping us, but I mean you get the people when, you know, they found out [daughter’s name] had a cleft and that they came away with some horrible remarks actually, didn’t they?

Who said this?

Rebecca: It was somebody in my mum’s... my mum’s a nurse.

Russell: Oh yeah, yeah.

Oh OK.

Rebecca: And... there was another .. health visitor of some description, no, a pharmacist, the pharmacist, and she told my mum that a cleft palate was directly because I had been doing drugs and I was an alcoholic.

Oh dear, right, that’s not very helpful.

Rebecca: Which is the complete opposite of true, but there is that prejudice out there, I think.

Russell: Yeah I... I mean…

Rebecca: Somebody else has said something like that before, haven’t they, to you?

Russell: Yeah I think there’s a lot of people don’t really know what it is. They just think it’s, like Rebecca says, something to do with drink or drugs or 

Hmm.

Russell: But there’s a lot of people that ask questions as well, because it’s not as widely common as…

Rebecca: Yeah.

Russell: …as other issues.

Rebecca and Russell explain how their daughter was taken to the Special Care Baby Unit when it was discovered she had a cleft palate at birth.

Rebecca: They took her away up to the... special care baby unit.

Russell: Hmm, hmm. Hmm, hmm.

Rebecca: Took her up to special care baby unit, and that’s where she stayed overnight there, and I was just put in a ward. And then we got to see her the next day, didn’t we?

Russell: Yeah it just kind of all happened.

Right.

Russell: It was really quick.

Rebecca: Yeah.

Russell: We left here just before midnight, got to the hospital and six hours just kind of flew by. And then it was two hours trying to get her to feed. And you were getting really tired and so…

Rebecca: Yeah.

Russell: … was [daughter’s name]. And that was when the nurse tried to calm her down, and they found it.

Rebecca: Yeah. I was completely, I didn’t... I just looked at her and she was just my baby, and I didn’t... I didn’t feel upset or anything like that, not at all. When I first got told I was still kind of overwhelmed with, “Oh my God, I’ve got my baby [laughs].”

Russell: And they never, they never really explained too much what it was until we met one of the specialists, and I think that was about four or five o’clock in the afternoon.

Rebecca: It was a speech therapist.

Russell: Yeah, yeah.

OK.

Russell: And that was kind of when we were really told what had happened and... and what to expect over the coming months. But they were great, weren’t they?

Rebecca: Oh yeah all the staff were absolutely brilliant.

OK.

Rebecca: Absolutely fantastic.

So just coming back to when you said they took your baby away, how did you feel about that at the time so soon after the birth?

Rebecca: I was exhausted at the time, but I was... I was kind of apprehensive, I think. But then I was like, “I want what’s best for her,” so I was OK, because they did say I would get to see her in the afternoon, so that kind of calmed me down a bit. But being away from her was difficult, was really difficult. Because I did get to see her that afternoon, but then I went nearly 24 hours after that without seeing her.

Yeah that’s quite a long time.

Rebecca: And that was really difficult, because the next day Russell came in to obviously see us both, and he had to come up to where I was first, and I was just crying. Because they gave me two pictures of her, and I was like, “But I want to be with her, and she’s alone and I’m not... I’m not there to help her.”

Russell: Yeah nobody seemed to offer to take her down either.

Oh.

Rebecca: I think that was the only time I really was properly upset. 

Rebecca and Russell’s daughter was kept in the Special Care Baby Unit and the couple missed out on feeding and changing their new baby.

Rebecca: If I’m honest... it did to begin with, didn’t it? We came home... I had her on the Monday, and we came home on the Thursday, and the week, the first week of us being home was, it was really difficult. I couldn’t understand why she was crying and I was... I was scared to go near her and... all these things. And the midwife was like, “It’s completely natural,” and, you know, I think they call day five or six or something the weepy day, or something like that.

The weepy day?

Rebecca: Yeah the weepy day, that’s what I got told, the weepy day [laughs]. But no, everybody was lovely. And then I kind of snapped out of it after about a week, didn’t I?

Russell: Hmm, hmm.

Rebecca: After a week I was like, “This is just wrong. You know, I’m so lucky that she’s perfect, to me, absolutely perfect.” And the feeding was going brilliantly.

Yeah.

Rebecca: She was just... she was doing really well. So... it did affect initially that I was... that first week of us being home with no midwives to help me or anything like that was hard.

So you were totally on your own and no one came to visit you at home or?

Rebecca: No I mean people did come to visit us with the new baby, but it was just... 

Yeah but professionals I mean.

Rebecca: Yeah the professionals came after a couple of days, wasn’t it?

Russell: I can’t remember. I know... 

Rebecca: Or was it a week? I think after we’d been home a week, a week and a bit possibly, the cleft specialist came out to see us.

So it’s quite a long time, a week, isn’t it?

Rebecca: Yeah but she was always on the other end of the phone, she was absolutely brilliant.

Oh OK you had the phone, telephone contact?

Rebecca: Yeah if I needed it. But I didn’t... I didn’t feel that, I didn’t realise at the time that... what I was feeling was because ... I hadn’t had the initial like 24 hours, you know, just seeing her and spending time with her.

Because I think we were only able to go in for a couple of hours before she was getting tired and needed fed by the tube again, and things like that. And I mean I didn’t even change her first nappy. You didn’t either.

Russell: No.

Rebecca: It was, she was taken away, so the staff did that. And it’s like... it was hard because it was like, oh, you expect all these things and... 

So you had a lot of expectations which?

Rebecca: Yeah just the normal things, like changing the first horrible nappy and trying to... I really wanted to try and breastfeed her, and I couldn’t, and that took a while to get used to, but then... I was fine.

Russell: But you did... you did really well though, you need to remember.

Rebecca: Yeah [laughs].

Russell was finding it difficult to manage emotionally after witnessing his daughter’s breathing difficulties. He was prompted to seek professional help by a speech therapist and was able to get counselling through his employer.

Russell: Well I actually had to see a counsellor through work.

You did?

Russell: Yeah.

Oh OK yeah.

Russell: I got one set up because I was... because I was really struggling.

Oh OK yeah.

Russell: It was just so hard. But we never really got offered anything... you did through your GP.

Rebecca: I did through [name], the speech therapist as well.

OK more in a formal kind of way or did you see?

Rebecca: No just she said if we ever needed anything, you know, she could put us in contact.

OK so she helped to coordinate that?

Rebecca: Hmm, hmm oh she’s been fantastic. She’s been the biggest help,

Russell: Yeah.

Rebecca: hasn’t she?

Russell: Been amazing.

Rebecca: Yeah I mean I would... I don’t think we would have been... done as well if we hadn’t had her support at the very beginning as well.

Rebecca: Because she was just, she was always saying, “I’m just on the other end of the phone if you have any questions,” all that kind of thing. And I think she would come out once every couple of weeks.

Russell: Yeah.

Rebecca: For the first couple of months, and then it was like once a month, and then it just, it gradually got less and less, and then we’d just see her at appointments. So she’s been fantastic.

Russell: I seen her today.

Rebecca: Did you?

Russell: Yeah she waved at me on the bus.

OK so going back to your counselling, how easy was that for you to source, and did you know where to go?

Russell: Yeah we’re quite lucky at work, our manager, in quite a big office, we offer it as support to staff that need it. So I knew exactly where to go, quick phone call, and I think it was within a week it had all been set up, and that was just down the road actually.

OK that sounds…

Russell: Yeah it was really good and it really helped me.

And was the counsellor specialised in this kind of thing or was it more general?

Russell: No, just general.

Yeah, yeah.

Russell: And it was good, it really helped me, and it helped me open up to Rebecca as well when... because, I don’t know, I’d just kind of been brought up that, you know, solid wall, sort of thing.

You felt you had to be?

Russell: Yeah.

Put a brave face on and?

Russell: Because you..

Rebecca: That drove me mad.

Oh right yeah.

Rebecca: Oh.

Russell: But it was hard because we were... we were struggling with [daughter’s name], and Rebecca, started fainting randomly as well. So that just... she was one minute walking down the hall and then she would just faint. So all that was going on and then... just... 

Rebecca: It was a fun couple of months, wasn’t it [laughs]?

Russell: It was really hard. But now, it’s all worth it now. She just... I come home and I see her and she just comes running up to me and…

Rebecca: Oh yeah, best thing in the world.

Rebecca and Russell’s daughter had her cleft palate closed and the operation took longer than they had expected

OK so has she had her first operation, has she had the repair done?

Rebecca: Yeah.

OK how old was she when she had that?

Rebecca: Six months and six days.

Russell: Yeah six months.

So perhaps you could tell me a little bit about that in your own words, and how that went?

Rebecca: That was... the hardest... the hardest just 24 hours of my life.

It really was. And we got there and there was... there was four of us, four babies and four parents. And we weren’t sure if Russell was going to be able to stay in the hospital with us, so he booked a hotel.

We’ve got tissues here.

Rebecca: No [laughs] I’ll be OK. He stayed in the hotel, but I stayed by [daughter’s] bed, along with, I think all the other mums [laughs] did the same as well.

You stayed by the bed?

Rebecca: Yeah and they were quite happy to allow the parents to do that. They were, the hospital staff were brilliant. And [daughter’s name] was the first one to go in. We had to go the day before and, and first thing in the morning she went in for her operation. And I think they said it would take maybe one and a half to two and a half hours, is what they expected, and five hours later she was still in the operating theatre.

Oh gosh.

Rebecca: So we were, we were panicking, weren’t we?

Russell: Yeah.

So what explanation did they give you?

Rebecca: It was harder than they expected it to be. I mean the surgeon had checked it, but I don’t think she had seen just how far forward the palate had come, had come obviously. And when she repaired it, she said it was such a tight repair that she had to put two lacerations as well, was that what she called it?

Russell: Yeah that’s what she called them.

Rebecca: Two lacerations either side of her mouth, just big... slits basically, to allow the palate to grow and heal.

Are they internal or external?

Rebecca: Internal, just either side... obviously right down the middle, the stitches, either side.

Inside the cheeks?

Rebecca: No, on the roof of her mouth.

On the roof of her mouth?

Russell: Yeah.

OK.

Rebecca: Yeah just two cuts either side. And I’ll never forget going to see her, she came, like they came and said, “That’s her out of theatre now.” 

Rebecca and Russell feel that the lack of awareness displayed by members of public is based on fear of something they don’t fully understand.

Rebecca: No I don’t think a lot of people understand it, which is why when, you know, people ask, we’re more than happily... happy to explain it.

Yeah.

Rebecca: Because we want people to understand because we know some people like if their child, child has a lip , you know, they’ll... the child gets looked at, and things like that. I mean we were sitting in the waiting room for [son’s name] appointment, and there was a seven week old baby there, and he had a cleft lip, and he was just the most beautiful little boy I’ve ever seen.

Yeah.

Rebecca: Honestly he was gorgeous. And... I think that the mother was apparently very upset and angry that this has happened, but the dad was more than happy, you know, just to sit and speak. And we were just, we were just chatting about our experiences, but I think what was coming across was that the child gets looked at a lot, and it’s just a case of people stare, they don’t ask, they don’t speak to them.

No, they’re too scared to say anything.

Rebecca: Yeah and I think that’s the problem: I think people are scared.