Andy and Diane

Age at interview: 36

Brief Outline:

Andrew and Diane were informed by a sonographer that their son had a cleft lip at their 20 week scan. When their son was born it was clear that he also had a cleft palate.

Background:

Andrew and Diane are married and both White British. Andrew works full-time as a scrutiny officer for a housing association and Diane works part-time as an administrator for a publishing company. They have one 2 year old son.

More about me...

Andy and Diane were informed by a sonographer that their son had a cleft lip at their 20 week scan. The couple were then sent away with little information and told to come back the next day when a consultant would be there to confirm the diagnosis. In the meantime Andy and Diane looked on the internet to try and find out more information and were overwhelmed by the range of experiences reported on the web. The consultant who confirmed the diagnoses delivered the news to the couple in a blunt and negative manner, and it was suggested that their son may be born with other syndromes and have potential breathing problems. Most distressing for Andy and Diane was the fact that were asked to consider a termination and were left to consider the options over a weekend without knowing the full context of the situation. Andy and Diane were deeply upset and responded by asking for a second consultants’ opinion. The second consultant confirmed the presence of a cleft but was much more positive and explained that there were many things that could be done about it.

The couple went on to have appointments with specialist cleft nurses. The care pathway for cleft was explained to them and they were shown pictures of ‘before and after’ surgery. The couple began to feel more reassured and now felt able to ask the professionals questions about their son’s future care and treatment. 

Andy and Dianes’ son was born with a unilateral cleft lip and palate and had to be fed with special squeezy bottles as he was unable to breastfeed. One positive aspect of bottle feeding was that Andy could be involved with feeding his son. Following their sons’ cleft lip repair the couple were able help healing by massaging and rubbing Vaseline on his scar and they also had to put stents in his nose to help shape the nose. It took a while for Andy and Diane to adjust to the look of their son and also the new sounds he made when he laughed. As cleft babies can often have glue ear he will also have his hearing and speech monitored regularly alongside sessions of speech therapy. 

Having a child born with cleft means that there are a lot appointments, and the travelling involved impacts on the families’ financial resources. Although they have accommodating employers they often have to take annual leave which means spending time together as a family is also compromised.

Andy and Diane were upset by the way health professionals communicated with them after discovering their son had a cleft lip. One consultant asked them to consider termination (abortion) of the pregnancy.

Diane: Yeah 20 week scan, yeah, 20 week scan they picked it up.

Andy: It was on the Thursday, wasn’t it, on the Thursday afternoon I think we went in there?

Diane: Yeah.

So if you could tell me a little bit about that day and what you can remember?

Andy: All I remember is sitting there and then... she... they sort of disappeared out the room, didn’t she, and then sort of came back in and then sort of like said, you know, “It could be an issue basically and this is what could happen.” She was quite calm I think generally about it.

Diane: Hmm, hmm.

Andy: But obviously as soon as we were sort of told we didn’t... like I say, we didn’t know anything about it.

Diane: We didn’t know much about it, no we didn’t.

Andy: And we were kind of like desperate to get home to try and find out a little bit more, because we were called in to come in the next day on the Friday.

OK so you were warned that there was going to be an issue with cleft?

Andy: That there could, yeah, there could be an issue there.

Was that they’d detected the lip, I imagine?

Andy: I think it was.

Diane: Yeah.

Andy: Just a little.

Diane: Well they said initially that it was quite a wide... a wide cleft lip but they couldn’t tell obviously whether the palate would be involved. And, yeah, they sent us home and said, “Come back in tomorrow and see a consultant, who will do another scan and confirm cleft lip.”

Andy: Because we got, we got in there obviously, you know, not fully aware of what was going on. And then we had the 3D scan, didn’t we, pretty much.

Diane: Yeah.

Andy: And it was, it was, it was something like four o’clock, half three in the afternoon, on a Friday afternoon, and the... I can’t remember?

Diane: consultants?

Andy: you know the two, yeah, it was two, wasn’t there?

Diane: Hmm.

Andy: Two consultants in there basically that had... you know, were sat in there obviously doing that. And after they... when they looked at it and had gone out and come back in and whatever, it was the way it was delivered was frankly atrocious in my opinion.

Diane: Hmm very negative.

Andy: Extremely negative. It was like, was it three options, wasn’t it?

Diane: Yeah they were saying that the cleft was very wide and the palate would certainly be affected. But they were also suggesting that because it was such a wide cleft that there could be a lot of other syndromes attached to it, and there could be potential breathing problems, the baby might not be able to breathe, you know.

Andy: And eating.

Diane: And eating.

Andy: It was just everything pretty much.

Diane: And then they, yeah, just presented us with three options.

OK.

Diane: The top one being termination.

Andy: Yeah it was.

Diane: Which was at that point we hadn’t even…

Andy: Yeah we didn’t even think that or consider that.

Diane: …we hadn’t even considered, you know, at 20 weeks as well it was a shock that they could even, or I didn’t even know that they could even offer…

Andy: I know yeah.

Diane: …it at that later stage. And so, yeah, that was a bit of a shock.

Andy: It was just blunt. I think the way it was delivered was blunt. There was no... it was like, “Carry on with the pregnancy,” it was you know, “If it’s born there is a team around to help,” that was it. It wasn’t, there was no... there was no further information, you know, “This is what they can do, this is what happens,” blah, blah, etc. It was that, and then it was just like, “Or you can terminate.” And then it was, “Go away for the weekend and think about it.” And that was, that was literally how it was delivered, you know. And I just thought... I mean I went into panic mode frankly. I went into absolute, I was awful wasn’t I?

Diane: Well we had rung up and asked…

Andy: Yeah.

Diane: …for a second…

Andy: Yeah that was the second one wasn’t it?

Diane: Yeah we’d rung up and asked for a second opinion. We wanted to see another consultant and get another scan done and get their opinion. And this consultant was so much more positive about it.

Andy: Totally.

Diane: She was very much, “Yeah it’s a cleft. It’s a wide”…

Andy: Him wasn’t it?

Diane: she was... there were so many things that could be done about it. “We’ve got a specialist team here. There’s... you know, it’s not a life-threatening condition.” And if we wanted to have further testing done to make sure that there wasn’t any underlying syndromes which could potentially be a lot more...you know, a lot more to deal with, and... more breathing problems was our main concern was, you know, the baby would have breathing problems. But it was just a different approach to deliver the information, which was... you know, so much more.

Andy: Something you kind of would have expected.

Diane: Yeah.

Andy and Diane found support through telling other people and getting involved with their regional Cleft Lip and Palate Association (CLAPA) parent groups.

Diane: We told... parents.

Andy: That was mum on the Friday, wasn’t it?

Diane: Yeah on the Friday after we’d had the second scan but I think at that point we were so confused…

Andy: Yeah.

Diane: and so distressed that... 

Andy: Yeah probably.

Diane: you know, they were... there’s not a lot they could really... do or say. But they were very supportive, you know, they were supportive…

Andy: Yeah.

Diane: …throughout. And then once we were…

Andy: clear on it, you know.

Diane: ..clear on, you know, all the information, we had all the information, then we could tell, we told all of our friends and the rest of the family. And everyone was very supportive and... you know, just... 

Andy: Yeah, yeah.

OK so did you feel supported?

Diane: Hmm.

Andy: Oh yeah I think we always have done, yeah. But, as I say, it’s just at the beginning it was just like, like I said, just absolute mayhem, like kind of, you know, trying to get your head around everything. And I think that clouded judgement and stuff like that but, you know.

Diane: But no, we never had any negativity from any family or friends.

Andy: No it was like, “We’ll be around, whatever,” you know, and so I think it’s, yeah... [laughs] way better than it’s made out to be.

So amongst both your families has anybody had any experience of cleft before?

Diane: Not families, but after we, you know, told friends and stuff, it’s surprising the amount of people that come up and say, “Oh I know so and so who had a child with a cleft,” or, “I worked with somebody who’s, you know, got a cleft,” or something so…

Andy: …it’s a lot more common than you’d think.

Diane: It is more common but obviously before you don’t really... know about it so much.

Yeah it kind of heightens your awareness, I suppose?

Diane: Yeah, yeah.

Andy: Yeah because you never... before like, you know, even like... I suppose even walking around and you know, seeing people and stuff like that, you probably wouldn’t have picked up anything.

Diane: You wouldn’t have noticed it.

Andy: But now, you know, you kind of... you kind of do in a way, you know. But yeah, but yeah, there are so many people out there, and like so many different sort of family members and friends and stuff like that that we’ve connected to and…

Diane: …who know somebody yeah.

Andy: And it’s just, it’s just, yeah... but that’s been quite…

So that’s been positive?

Andy: Yeah that, that’s been supportive in itself, you know.

Andy and Diane found themselves questioning their behaviour when they found out about their son’s cleft. The health professionals reassured them that it was not their fault.

And at any point was there ever any discussion amongst yourselves about what might have caused this?

Andy: I think we had plenty of that, didn’t we?

Diane: Yeah we, yeah, I was, I was constantly thinking, you know, was it something that I did, or was it something that I didn’t do? 

Andy: And it didn’t help because we were on holiday and we didn’t know that you were pregnant, did we basically?

Diane: Yeah so I was thinking, oh, you know, because I didn’t know, was it because I, you know, flew with an aeroplane, you know, was out in the sun, you know, silly little things that I was thinking oh, you know, was it that?

Andy: Yeah, like I say, because we didn’t really, because we... we went in there and we were thinking that you were like six/seven weeks, and you were actually 14 weeks pregnant.

Diane: Hmm yeah.

Andy: So we were out having meals and like drinking on holiday and stuff like that as well. So it was kind of like... 

Diane: Yeah.

Andy: But, you know, I think you were quite hard on yourself.

Diane: Hmm.

Andy: I think when, when actually there’s no known reason really at the moment.

Diane: Yeah.

Andy: You know, so I think that was…

Sorry, did the health professionals help you to kind of understand that?

Diane: Yeah they were very... they were very clear saying, you know, “Nothing that you’ve done would have caused it, or there’s nothing that you could have changed differently.” But I think you still question yourself, I think.

Andy was glad to be able to share the responsibility of bottle feeding his son and gave him the opportunity to bond with his new son.

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.

Andy and Diane explain how they share the same ideas about the treatment their son has undergone for his lip and palate and the availability of future treatment taking him up to an adult.

Andy: I think there’s always assumptions made about, you know, just, you know, even what people class as being normal in society and all that kind of, you know, that kind of stuff as well. So you just... you kind of look at that and, like I said, it’s about giving your, your child every opportunity that they possibly can do in every piece of, you know, help, support, advice, whatever it is.

Diane: And I think our surgeon’s very good, isn’t he? Because he’s, he’s very much “If you’re not happy with it, you know, come back and there are things that we, we can do, if you’re not happy with the palate repair, if you’re not happy with the lip repair.” If he’s... you know, when he grows up, if he’s not happy with the, you know, the way his, his lip has, or his nose has formed, you know, there are things that the surgeon is happy to do.

So do you feel like you’re sharing the same agenda then?

Andy: Yeah, oh yeah, yeah.

Diane: Yeah he definitely wants, you know, the best for them, and doesn’t want... you know, wants the parent and the child to be happy, you know, happy with what he’s done.

Andy: I know someone, like my, my best friend basically, and she’s 18, I think it is, and she was the one with the cleft, and she’s had like, I think it’s like 12 like, you know, nose, you know, alterations and stuff like that because she hasn’t quite been happy with everything. But, you know, that to me, knowing that that’s available is, you know, in, but then it’s up to [son’s name] to make that kind of decision. So that in itself is, like I said, you know, we’re perfectly happy with everything.

Diane: The fact that they’re there until, I think they don’t get signed off until he’s about 20 so, you know, if he’s 18/19 and wants something changed then... he can speak to the surgeon.

Andy and Diane were anxious in the lead up to their son’s closure of his cleft lip but were reassured by the skill of the surgeon.

OK so we were talking a little bit about the lead up to the lip repair, so if you can cast your mind back to the day of the operation, the first operation, and events leading up to that?

Andy: …I don’t know, I mean it’s always apprehensive when you, when you take your child in for surgery, you know, anything like that, especially something that kind of... like that.

Diane: Yeah.

Andy: I mean... 

Diane: Yeah I think I was nervous for about three months before the operation.

Andy: I was getting [laughs] just, yeah, you kind of build yourself up and go, “Yeah it’s going to be fine, it’s going to be fine. Everything’s going to be perfectly alright.” And, and, you know, and then, then you get to that kind of... you know, yeah, you’re going down and, you know, yeah, you’ve kind of said, no you couldn’t.

Diane: Yeah.

Andy: You know, you were having [laughs] kind of, you know, you couldn’t kind of do it.

Diane: All that yeah.

Andy: And it was, yeah, it was quite... you suddenly think it’s going to be traumatic. Because when you... when you see him there and... and you put the mask over him and it’s kind of... you know, and then somebody like, you know, someone takes him away, you know.

Diane: Yeah I don’t, I don’t think you can ever imagine unless you’ve been in that situation. [brief interruption] Yeah I don’t think, unless you’ve been in that situation, that you can know

Andy: No.

Diane: how it feels to hand your child over, you know.

Andy: And then you’re sat waiting for like three hours or four hours.

Diane: Four hours for the first operation, yeah.

Andy: You know, it kind of

So it must require an awful lot of trust, I imagine?

Andy: Oh I think it’s comforting to know that you’ve got the, you know, the quality of the... the surgeon that’s involved.

Diane: Hmm.

Andy: I think that certainly sort of helped. And then seeing a few sort of before and afters in what’s, you know, things like that, those... that again you see the kind of the work that can be done. I think it’s damned amazing, frankly. And... so certainly we got the confidence in you know, the surgeon, in the fact that he’s a perfectionist in what he, what he’s doing. And that, to me, is... because I’m a bit like that sometimes as well, so it was kind of nice to know that people are kind of like that.

Andy was fortunate that his employer was able to grant leave to get to his son’s appointments with Diane. However, ultimately it impacted on the family’s holiday time.

Andy: Yeah it’s a big impact, yeah.

Diane: Yeah it was hard, yeah it was hard.

Andy: And it’s like, yeah.

Diane: And like you say especially, you know, constant appointments and things, and you having to take time off work.

Andy: Yeah.

And how accommodating are your employers?

Andy: I think quite honestly they’re... they’re very accommodating. You know, I think, to be honest with you, if I was probably in a different role in a different job, I don’t know how much. Because it’s things like surgery, if it’s planned it’s not classed as like dependency leave or compassionate leave or whatever.

It falls in a gap doesn’t it?

Andy: Yeah, you have to take that as holiday. And then obviously, you know, I think I took, like I said, a few a sort of week after his first one to make, you know, to see everything was OK, and then the same with the second one. And it was, you know, that’s been OK but…

Diane: I think you’re just lucky with your employer.

Andy: I think I’ve been lucky with it. Whereas otherwise, like I said, you know, but I, you know, I have, we haven’t... like I say, we haven’t had a... afford to go on like big holidays or anything else like that anyway, so I’ve used my leave to you know.

So it has a knock-on effect…

Andy: Yeah.

…in terms of spending time as a family…

Andy: Well yeah, yeah.

…under normal circumstances?

Andy: Precisely.

Diane: And a lot of, all... [son’s name] hospital appointments I had to take off as holiday, and working part-time I don’t get that much holiday anyway so... definitely impacts on my time that... that we…

Andy: Yeah.

Diane: I can just book off as, you know, family time. It’s, you know, I’ve got to save days for this appointment and that appointment.

Andy: For this appointment and that appointment, yeah.

Diane: And potential appointments that might, you know, arise, so yeah.

Can you see any way around these issues, anything which would help?

Andy: Ooh God [laughs] I think sometimes it’s maybe, you know, if dependency or, you know, compassionate leave or whatever, ever the law changed around that kind of... that kind of way, then that would probably... certainly help [umm] you know, even if it was a few days. Because I know a work colleague of mine as well where, likewise, the same thing happened: because it was planned, literally she spent two weeks, you know, as leave basically.

Diane: Hmm.

Andy: Because the organisation, you know, it’s not set up to help parents’ kind of that way.

Diane: Yeah I think definitely if your child has a medical condition or, you know, potential medical problems, that... allowances should be made for that, rather than having, you know..

Andy: Just to use it up, or use part of it, or it can be used different ways, you know.

Diane: Yeah.

Andy: Because that would be kind of useful. But, yeah, I mean that’s down to the employer. I mean I can’t... I can’t fault my employer at all, because they have been good at that, and my manager has been particularly good, but then that’s just the…

Diane: Just been lucky.

Andy: Yeah exactly, some may be more…

Andy and Diane encourage parents to look at UK based information from reliable sources such as CLAPA. They also question the information given through the NHS and how it is delivered.

Diane: I just think the best advice is to stick to, if you’re going to do research, I think stick to... the proper... 

Andy: Official sites.

Diane: Official websites, like the CLAPA website or the hospital has got their dedicated website. Or to speak to a cleft team and see if they can put you in contact with a family who has gone through it, because I think that’s the best 

Andy: I certainly think so, yeah.

Diane: The best route to go down: somebody who has been through it, or to read stories on the CLAPA website of people that, you know, their stories. Rather than just go ploughing on Google and finding, oh, all sorts of negative, I think.

Andy: I think that’s what it boils down to, because there was a lot of stuff from like America with the stories and things like that…

Diane: Which are very different.

Andy: And it’s different levels of care and different systems. And you can’t kind of…

Diane: Yeah, just to be careful I think.

Andy: You know, you can’t compare that, you know, because they haven’t got an NHS over there. And like I said, there’s different levels all over the place; it’s kind of, yeah. I certainly think that, from my perspective is... to deal with this kind of message as well then, you know, some NHS departments maybe need to re-look at how they deliver the messages and what support is available when they do deliver them at the time, you know, and that help and support. Because, certainly from our perspective, and I think from somebody else as well that we know as well, it was pretty much... delivered.

Diane: Quite abrupt yeah.

Andy: That kind of way as well. So I think, you know, I think they need to be aware about what can happen and how you can deal with it.

Andy and Diane were not satisfied with the way in which their son’s cleft lip was diagnosed by a sonographer. Later they met the Clinical Nurse Specialist who introduced them to the cleft team.

Diane: No. I mean our... the sonographer was, you know, they, you know, she did her job: she detected it and she passed us on to a consultant. But I think it was the consultant that, that didn’t have... the consultant there that did the…

Andy: Didn’t have the people skills.

Diane: Scan, they didn’t have the, they didn’t have, yeah, they didn’t have the people skills and they didn’t have the... I don’t think they had... you know, all the, the information either, to be able to say. You know, to be reeling off, “Oh it could have this, could have that, could have,” you know, is not very helpful for anybody.

Andy: I think especially if you are delivering and you’re doing that kind of job, surely, you know, it’s like an electrician turning around and telling what a plumber’s job is when they haven’t... it’s not the same thing. You know, if you’ve got the very basic skills you’re not going to deliver that... what’s really needed at the time.

Yeah sure.

Andy: So I think that... yeah, that system needs to be maybe altered. ...In terms of level of care, support, whatever, I think, you know, I think it’s been really, really good.

Did you feel empowered to ask the questions you wanted to ask as well?

Andy: Until we…

Diane: In terms of when we were put in touch with the cleft team definitely, because they were very open to all your questions and could pretty much answer.

Andy: Hmm.

So at what level was the communication easiest? At what level of health professional, was it the nursing level, the?

Andy: I think the specialist nurses, I think.

Diane: Specialist nurses, yeah.

Andy: Definitely.

Diane: You know, they were always there, weren’t they, and?

Andy: They were the ones who’d got answers basically to everything and they were the ones that dealt with it first-hand and like, you know ... you know, hundreds and hundreds, thousands of, you know, children so…

So they were actually quite a mediator between you and the higher level of consultant…

Andy: Yeah.

Diane: Yeah.

…would you say?

Andy: Yeah absolutely, yeah.

Diane: And if you’ve got any worries or, you know, any queries about... anything, you contact them and they’ll put you in contact with the... get you an appointment with the right team and the right person and the surgeon if you need to so…

Andy: They’re on the doorstep if you want them as well.