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Tamsin and Andrew

Age at interview: 29
Brief Outline: Tamsin and Andrew have a son born with bilateral cleft lip and palate. They first became aware of their son’s cleft lip at their 20 week scan although he had been closely monitored since their 12 week scan as it was suspected he had a genetic syndrome.
Background: Tamsin is White British and full-time mother of a son born with bi-lateral cleft lip and palate and a suspected genetic syndrome. Tamsin is married to Andrew who is also White British and works as a project manager of an electrical contractors company.

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Tamsin is White British and has trained and worked as a secondary school music teacher. Tamsin is married to Andrew who is also White British and works as a project manager for an electrical contractors company.

Tamsin become a full-time mother when the couples’ first child was born with bi-lateral cleft lip and palate with a suspected genetic syndrome. They first learned of their son’s cleft palate whilst Tamsin was pregnant – it was at her 20 week scan. However, the baby had been monitored closely since the initial 12 week scan because it was discovered that he had a small nose bone a sign that is associated with Downs’ Syndrome.

At the 20 week scan Tamsin and Andrew were referred to the cleft unit at the hospital the same day, and they were told that it was a solvable problem. The cleft nurse rang them within 24 hours to discuss the diagnoses and what future treatment would involve. They were glad that they found out beforehand so they could prepare themselves the best they could. However, they were trying to find answers. Tamsin and Andrew were thinking about it all the time, so they looked on Google, even though the doctors say “don’t do it”. The couple put in all of their son’s symptoms and it came back with some ‘really rare and nasty syndromes’. They also found that there was a lot of complex medical language but they treated the information they got from the internet very carefully. 

The medical specialists gave them conflicting advice regarding the severity of their sons’ condition. One geneticist told them that he wouldn’t be able to ‘access society and might end up being a vegetable’ and they were also made aware of the 24 week cut-off for termination. However, another hospital said it was just a cleft lip and palate so the couple sought a second opinion through the support of their midwife. 

Tamsin and Andrews’ son was born full term and because he had a cleft palate was unable to breastfeed. The cleft nurse team came within 24 hours and taught them how to use the special bottles. The midwives on the maternity unit were very cautious of using the bottles without the guidance of the cleft service. Tamsin and Andrews’ son was also taken to the SCBU (Special Care Baby Unit) for 2 and a half days to get his feeding started with a nasal gastric tube and to check that he was generally ok. The cleft nurse taught them how to use the syringe and bottle feed their son – he had the muscles to suck but did not have the suction due to the cleft palate so they had to encourage him to suck and also to breath. Consequently, the bottle feeds took a long time and, with the addition of expressing breast milk, became an exhausting experience, especially for Tamsin.

Tamsin and Andrews’ son had had his first lip repair at 5 months and this was done in two stages. He was due to have it done at three months but he had a cold so it was delayed to 5 months and subsequently his second lip and palate repair operations were delayed. Before the lip repair Tamsin and Andrew were scared about how their son’s face was going to change. But after the operation they got on with looking after him and having to clean the wound. He bounced back quickly and he was smiling again – it was a different smile but it was a really wide big smile. Their son is now 18 months old, he is happy and socialises well with other children.

Finally, although the care of Tamsin and Andrews’ son has been so good and the health professionals were ‘amazing’, there have been times when they felt that the communication from and between the different services and hospitals could have been better.
 

Tamsin and Andrew were glad to have found out about their son’s bilateral cleft lip and palate at the 20 week scan. The couple also had to consider the possibility that their son would be born with an undiagnosed genetic syndrome.

Tamsin and Andrew were glad to have found out about their son’s bilateral cleft lip and palate at the 20 week scan. The couple also had to consider the possibility that their son would be born with an undiagnosed genetic syndrome.

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Andrew: It feels like you’ve got very little time to digest what’s being told to you, to really understand it, to, to then be able to move forward with that information and…

Tamsin: …make a decision either way, isn’t it? So…

Andrew: Well it was making decisions either way, and also being happy with the way you’re going forward, I think. I think our midwife became... it got to a point where our midwife was going, “You’ve got to actually now start enjoying your pregnancy and, and looking forward to  the birth of your child, and things like that. Because you’ve got to kind of get over that stage at some point and look forward to having, you’re still going to have…

Tamsin: …a baby.

Andrew: …an amazing little baby that you’ve got to look after and love and care for.” And you’ve got to, I think definitely for the mother, it’s very different being the father, but you have that bonding with your child in the womb.

Tamsin: Hmm.

Andrew: …and things like that. And there were definitely times through the pregnancy that, with everything that was going on, that could very easily be destroyed because, you know, we were thinking about... you know, some of the things we were having to think about, and almost detach yourself away from…

Did you did you feel able to enjoy the pregnancy?

Tamsin: I would say no. And I think... I think that, that pregnancy will always be completely coloured. I’m very pleased that we found out before he was born though.

Right.

Tamsin: So I wouldn’t really have wanted it any other way. I mean bilateral, complete bilateral cleft lip is very obvious, I think. It looked obvious [laughs] to us anyway on all the, on the scans, even without a 3D scan it was, it was obvious that there was something not right there. So it would have been unlikely for them to have missed it. So I’m glad that we found out beforehand, because we could prepare ourselves. Even though, when he was actually born, we were obviously not prepared, [laughs] I think. But we could prepare ourselves as much as we could.
 

Tamsin and Andrew’s son was born with bilateral cleft lip and palate and has also been tested for other unspecified genetic conditions.

Tamsin and Andrew’s son was born with bilateral cleft lip and palate and has also been tested for other unspecified genetic conditions.

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Tamsin: And you got, you got the standard cleft lip and palate treatment. If it was just that then actually it was OK, if that’s what you were going to look at. But you are told quite early on that there are there is potential for extra anomalies with the cleft, that are linked to a cleft. So…

You were told that?

Tamsin: Yeah.

Yeah OK so would it be fair to say that it wasn’t a total surprise or?

Tamsin: I think with [son’s name] we were more in, more saying, “Oh well there is obviously something going... happening here, more than a cleft lip and palate. So... 

Andrew: Again, I think if we had just been diagnosed at 20 weeks.

Tamsin: Yeah.

Andrew: Then the story would be very slightly different then, that you were just going to... you know, “You’ve got a cleft lip and palate; we don’t think there’s anything else going on.” But because we had led up to the point of the diagnosis of a cleft lip and palate and they were actually looking for other things.

Tamsin: Yeah.

Andrew: then we’ve always been talking a broader, a cleft lip and palate was one of the symptoms of the broader thing that they were talking about with [son’s name].

OK.

Andrew: So not surprising,

Tamsin: Because we’re also, you’re also dealing with a new baby and... having to look after a new baby as well. So…

Andrew: I mean we were at least having, at that stage, one hospital appointment a week.

Tamsin: Yes.

Andrew: really, with different [deep breath] different things that we were looking at, sight and the cleft and, and different things like that so there was a lot of…

You mentioned his sight, was that something related to the cleft or?

Tamsin: We don’t know yet. The ongoing, we have ongoing genetic things going in. It’s probably quite likely that he has some sort of syndrome... he’s got a few too many symptoms of something. He could equally just be really unlucky and... we will see.

OK it’s yet to be confirmed?

Tamsin: Yes, yeah.

Andrew: It’s undiagnosed. If it is something, it’s something incredibly rare.

Tamsin: Yeah.

OK.

Andrew: So…

Tamsin: …we’ll have to see. Developmentally he’s, he’s absolutely normal, if you can [laughs] say normal, so it’s all physical things about [son’s name] that might be…

OK.

Tamsin: So he wears, yeah, he’s short-sighted, he wears glasses as well.
 

Tamsin and Andrew found that the midwives in the special care baby unit were cautious of using squeezy bottles. A Clinical Nurse Specialist (CNS) showed the midwives, Tamsin and Andrew how to bottle feed their son, and he was also fed by NG tube while he

Tamsin and Andrew found that the midwives in the special care baby unit were cautious of using squeezy bottles. A Clinical Nurse Specialist (CNS) showed the midwives, Tamsin and Andrew how to bottle feed their son, and he was also fed by NG tube while he

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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.
 

Andrew explains how the cycle of expressing milk had exhausted Tamsin, so she made a decision to feed her son with formula milk.

Andrew explains how the cycle of expressing milk had exhausted Tamsin, so she made a decision to feed her son with formula milk.

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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.
 

Tamsin and Andrew describe the process they went through leading up to their son’s first surgery to close his bilateral cleft lip.

Tamsin and Andrew describe the process they went through leading up to their son’s first surgery to close his bilateral cleft lip.

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Tamsin: That’s a big operation because their faces change so much.

Yeah.

Tamsin: And... we were warned about it. We’d been shown so many photos. Our cleft nurse had brought us photos firstly, but then also you go out and you meet other cleft parents and they show you obviously their photos as well. So you, and that becomes a bit more real because you’ve got the real child there as well as the photos of what was before. And... that was a big, a big change wasn’t it?

Andrew: Yeah.

Tamsin: But actually... yes, you do... you take loads of photos beforehand, you want to keep this record of what they are previously. And then you go in and you’re so scared about this operation that’s going to happen, and you’re so scared about what... the, how the face is going to change.

They come back from their operation and you get on with looking after them, because you’ve got to look after them, and actually I don’t know about you, but to me I just got on with the next bit so, of having to clean it, and actually it and seeing... cleaning the scars and seeing... it almost appear. But then to have him, he bounced back so quickly, he was smiling again, and OK it was a different smile, but he still had a really wide, big smile, didn’t he? 

Yeah some people say they miss how their child looked before, I don’t know, was that something, did you perhaps feel like that?

Andrew: W ... 

Tamsin: A week before his operation he’d also got his glasses, so he’d changed already then. And then we had this operation and it... I didn’t miss it, it was different though.

Andrew: I think it’s something that I had accepted it was a path that we were going down.

Tamsin: Yeah.

Yeah the sort of process?

Andrew: And it’s, it’s a step towards... [son’s name] better future really, I think, is, is we felt. So…

Tamsin: I can remember…

Andrew: …and funnily enough, we never... when we went in for the initial meeting at the hospital the cleft nurse said, “Oh well done for deciding to do it,” because it’s a cosmetic, it’s not, the cleft wasn’t a life-threatening condition. If we had done nothing about it, [son’s name] would be absolutely fine to go through his life and then decide if he wanted to do something in the future. And she said, “Oh well done for choosing to do this cosmetic thing,” and it had never really twigged [laughs] with us that it was a, it was a choice.

Tamsin: a choice, no, we just…

Andrew: We just kind of went, this is what we felt was the best thing for [son’s name], and seeing that first stage was [deep breath].

OK so would you say there was an expectation that that was the path you would take?

Tamsin: Yes, and we just... we just dealt with it. We knew he was always going to change.

Yeah.

Tamsin: Actually it was his second lip operation as well, when he, we weren’t…

Andrew: …that was more of a shock.

Tamsin: …we weren’t as, for some reason we didn’t prepare ourselves as much for the second one, which again, because it brought everything in… 

Yeah.

Tamsin: it was, it wasn’t a bigger change, but it was... another change that we hadn’t, for some reason, I suppose we hadn’t seen so many photos and we hadn’t met so many people who actually talked about that second operation and the change. Because it’s actually... it’s a bilateral thing, the second operation, if you’ve got a bilateral cleft lip you probably do have two; they don’t, they don’t always do them in one.

Sorry, so the first one, was it just one side then?

Tamsin: No, no, no they did do both sides. It was it’s just that because it’s a, it’s more of a cleft, I suppose, he needs more intervention to make it complete.
 

Tamsin and Andrew explain how they manage to get to clinics with their son who was born with bilateral cleft lip and palate. Andrew feels it is important for both of them to attend appointments.

Tamsin and Andrew explain how they manage to get to clinics with their son who was born with bilateral cleft lip and palate. Andrew feels it is important for both of them to attend appointments.

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Andrew: Yeah I mean the travelling is, is unfortunately the nature of the beast.

Yeah.

Andrew: So it will be… it will be what it will be [laughs].

OK.

Tamsin: The cost of it has been a... 

OK tell me a bit more about the cost, that would be good.

Andrew: The cost of transport is just high these days, especially going into [place name]. It effectively costs about £100 a visit, a hospital appointment, to meet those appointments.

Right, is there any help, any financial help at all?

Tamsin: Not as far as... well not as far as we’ve applied for.

Andrew: No.

Tamsin: Sometimes…

Andrew: We’ve never been offered anything so…

Tamsin: No, sometimes you can claim Disability Living Allowance, but as far as I know, they, it’s not there to help with the cost of travelling to and fro to appointments. It’s to do with, that’s to do specifically with the care of the child.

Yeah.

Tamsin: Maybe now that I’m not working, but I think we probably just earn... you probably earn just over the threshold to get any other help, and they’re reducing that all the time anyway, so yeah.

Yeah sure.

Andrew: I mean, yeah, again the NH, it’s amazing that the NHS does it in, it’s free at the point of care.
Yeah.

Andrew: But it still costs a lot [laughs] to be able to access that care and…

I was wondering about, you must, you must have had to spend time with your…

Tamsin: Yes.

…with your son in hospital.

Tamsin: When he’s gone in for operations we get a night…

Do you get, is accommodation provided?

Tamsin: We get free accommodation the night before, and then I stay in hospital and you go home.

OK.

Tamsin: We you could pay for another night but we, it’s just as expensive to go home either way so…

Is there hospital accommodation, or would you stay somewhere else?

Tamsin: We stay in the hospital accommodation.

OK yeah, so you have to pay for that or?

Andrew: Well I normally come home…

Tamsin: Yeah.

Andrew: …between and... because it’s just more cost effective to do that.

And you continue to go to work and?

Andrew: No we, I

Tamsin: He’s normally only in a night so…

Oh OK.

Tamsin: Yeah it’s not a long time.

Oh is he?

Tamsin: Yeah.

Oh OK sorry.

Andrew: And I always take holiday to... to be around and to get through that time. So that’s, I mean as a working…

Tamsin: It is taking a holiday, isn’t it, so…

Andrew: …as a working, full-time working person and my…

So you find the level of care is eating into your leisure time,

Tamsin: …at home time.

…at home time, off work time?

Tamsin: Yes.

Andrew:...We’re now eight, you know, or effectively we’re two years into having to have been going to hospitals. I’ve been lucky to have understanding employers, but the whole of my holiday has been effectively going to appointments and…

Right.

Andrew: …hospital things. And we are looking, we’re now at the end of that and…

Tamsin: Hmm.

Andrew: I’ll be honest, I’m really looking forward to taking a holiday.

Tamsin: [laughs].

Andrew: And not going to [laughs] and just taking…

Tamsin: Not having the recovery and stuff so…

Yeah enjoy time…

Andrew: Yeah.

…with the family.

Andrew: But that is again unfortunately the nature of the beast. And the tough thing is, I think the toughest thing for being a dad is that you are out to work and in, in the whole of that time it does get eaten up going to all these different…

Tamsin: Yeah.

Andrew: …appointments. Because you want to be there to go and find out what’s being said because, you know, in any context…

Tamsin: It’s hard to take it second-hand, isn’t it?

Andrew: It’s hard to take it second-hand, and in any conversation an individual can hear something very slightly being slightly different, and having two people at an appointment, we always find that we take something very slightly different from that conversation, but we pick up more as a whole from the conversation.

Sure.

Andrew: So it is... we’ve found it very important and useful that we’re both there to... as much as we can be. 
 

Tamsin and Andrew found the fact that other people, including children and older adults, asked about their son’s bilateral cleft a positive experience.

Tamsin and Andrew found the fact that other people, including children and older adults, asked about their son’s bilateral cleft a positive experience.

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Tamsin: With what’s happened to [son’s name], in a way we’ve had lots of attention from friends, family and community.

Sure OK yeah.

Andrew: And that again is an amazing positive that comes from all of the heartache that you get that you should really draw on that resource that people are wanting to be there helping and…

Tamsin: Yes and people are very…

Andrew: Very kind.

Tamsin: …nervous. A lot of the time you get we get questions of, “Has anyone reacted badly to seeing your child with this strange appearance?”

Oh yeah, yeah.

Tamsin: And we can honestly say no, never actually. I mean going out to shops, and all these old dears come up to you and say, “Oh your child smiled at me,” and we’re like, “No he’s just smiling in general, so [laughs] it’s fine.” Or they’ve come and asked about, “Oh is that a cleft?” I mean we never knew what a bilateral cleft lip looked like before, [son’s name]. We knew what a cleft was but not what it looked like.

Yeah.

Tamsin: Children often are the most honest people who will come up and point and ask you.

But you know that they mean no harm, so you just, and you just, it’s difficult to deal with but you deal with it. 
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