Becky and Mark

Brief Outline: Becky and Mark have two sons, the eldest, aged 6, was born with a deformed ear (Microtia) and their youngest son of 7 months was born with a unilateral cleft lip and palate. The cleft lip was discovered by a sonographer when Becky had her 20 week scan.

Background: Becky and Mark are married with two sons aged 6 years and 7 months. Becky is a social worker and Mark is a teacher in a secondary school. They are both White British.

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Becky and Mark have two sons, the eldest, aged 6, was born with a deformed ear (Microtia) and their youngest son of 7 months was born with unilateral cleft lip and palate. The cleft lip was discovered by a sonographer when Becky had her 20 week scan. Their older son was born with a deformed ear and a hearing impairment, so knowing that their new baby would have a cleft lip was another shock for the couple. Becky and Mark were concerned with regard to the implications of what having a cleft lip would entail. The sonographer referred them to a cleft specialist nurse who visited their home on the next working day, and she was able to help the couple put the birth of their son with a cleft into perspective. The nurse directed the couple towards the CLAPA website where they could see pictures of babies before and after cleft lip repair operations. They found the pictures reassuring but they also took the move of emailing the surgeon who had been involved in the care of their oldest son - he was able to give them some guidance as to what to expect. 

When Becky and Marks’ youngest son was born he was diagnosed with a unilateral cleft lip and palate. Having a cleft palate meant that their son had difficulty in feeding on the breast. The cleft nurse gave advice about feeding and directed Becky and Mark to a supplier of specialist feeding bottles called ‘Haberman’. Haberman bottles have a long teat which squirt the milk into the back of the babies’ throat. Becky and Mark both got on well with feeding their son in this way and he soon began to thrive.

Becky and Mark’s son had his lip repaired at 3 months and the couple had lots of opportunities to talk to the surgeon. The anaesthetist also spoke to them before the operation so they knew what to expect. Although their son was discharged the next day and was feeding again, it took Becky some time to get used to the new look of her son. The lip healed well and this process was helped by massaging the lip with Dermatix cream. Their son will need further surgery to repair his palate and has been diagnosed with a heart defect which may be related to his cleft. However, Becky and Mark feel they can trust and communicate well with the health professionals that are involved in the care of their son. 

A cleft nurse showed Becky and Mark images of ‘before and after’ surgery for cleft lip. They also got to meet the cleft surgeon who reassured them that any other problems could be dealt with.

Becky: I think what was the most helpful for us was just bringing us photographs and giving us sort of factual information.

Mark: And up to date information. Because a lot of information we had looked at, and we know about ourselves, like my own experiences is 20 years ago, you know, from kids I grew up with…

Becky: Yeah.

Mark: …which is different to what it is now.

Becky: Yeah completely.

Mark: The outcomes are so much different now, it’s unbelievable.

Becky: Yeah and I think it was having that, you know, that person, wasn’t it, that you could just like ask any question to at all.

So this person then, was she a nurse?

Becky: Yeah she’s the lead from the…

Lead nurse, OK.

Becky: …from the CLAP- the cleft team.

Yeah hmm.

Becky: And basically she let us talk, didn’t she? And any question at all you know.

Becky: And I think that really, really helped to put things in perspective really for both of us, wasn’t it?

Mark: And we were quite lucky that I was off at that time, wasn’t I?

Becky: Yeah you were.

Mark: So I got down to actually meet the surgeon.

Becky: Yes your, yes you... I had so many questions, and you did, and she just offered us, she said, “Would you like to come and meet, you know, the cleft surgeon? You’ve got a lot of issues, a lot of questions,” and she said, you know, “we can, you can, we can book in to come and see him.” So that was arranged.

Yeah.

Becky:  as well, which was really useful, wasn’t it? Yeah.

Mark: That was excellent. He was so good, wasn’t he?

Becky: Yeah and I think…

Mark: Explaining things and telling us what to expect.

Becky: Yeah and I think sort of, you know, what helped, because I think, you know, the image of a cleft is quite visual, and it’s the unknown, you know. Sort of I was like basically, well how, I wanted to know how big it was and, you know, we were offered a...this is probably going on a bit, but we were offered a 3D scan then.

Becky and Mark’s son was diagnosed with a cleft lip at her 20 week scan. They were grateful for further scans so that they could prepare themselves for the implications of cleft lip and palate.

Becky: As you know, we’d been sort of checked and sort of scanned throughout the pregnancy. So when it actually came to that scan, initially the sonographer sort of couldn’t, said, “Oh, you know, the baby’s in an awkward position you know, we can’t see the baby’s face.” So she said, you know, “Can you move position?” And then after a while, and they seemed to be taking for some time, she said, “Can you go for a walk and come back in about half an hour?” And even at that stage I just felt generally, you know, that the baby was awkward, they needed to see, you know, the face etc., but I didn’t... didn’t think at that particular stage that anything was actually wrong.

Mark: We had lots of scans before that, didn’t we, as well?

Becky: Yeah which I’ve just, yeah, just said about [laughs] yeah.

So at that point were you aware of cleft, did you have prior experience of children with cleft lips or palates?

Becky: Well I’m just sort of like sort of with previous pregnancies and how things, you know, can go wrong, had been just looking on the information leaflet sheet provided prior you go to the 20 week scan about what conditions can be actually detected, and the success rates. And I can just remember... seeing on that then that cleft lip, and I can’t remember the exact statistics but, you know, it was, you know, quite easy to see on a scan. And I think, you know.

Becky and Mark took the time until they felt emotionally ready to tell other people, including their own family, about their sons’ diagnosis of cleft.

Becky: I decided really, because a lot of people after the 20 week scan were, “How’s everything?” And I, we just, we couldn’t see the face, we’re having some more scans. Because I felt I... I don’t know if you felt the same, Mark I wasn’t emotionally ready to... you know, I was just still finding out that information and if anything else was involved and I just didn’t really want to be having to talk to people. And sometimes people can say, you know, the wrong thing. Perhaps they think they’re being helpful, but when, you know pregnancy, hormones are everywhere, then sometimes it’s not exactly…

Mark: We needed time ourselves to come to terms with it…

Becky: Yeah to come to terms with it, so I think…

Mark: …and find out what we needed to find out.

Becky: Yeah so close family we told. And then later on in the pregnancy we started telling people so they were aware before, you know, Daniel was born. And I think the way we basically said it was you know, sort of, “Oh yeah, we’ve found out Daniel’s got a cleft lip, we’re not sure about the palate but they’re things really that can be sorted.” And I just... and... left it at that. You know, some people asked some more questions, you know, about the surgery, when’s he got to have it done. But at that particular time we’d had the information and just felt more, more probably able…

And at the time we were both together, weren’t we, like Ethan’s school run is very often where you meet the parents.

Becky: Yeah.

Mark: And we both went together. We found it... 

Becky: Yeah.

Mark: better together, it was a bit of support for each other,

Becky: Yeah.

Yeah sure.

Mark: you know, to be there. And Ethan to be honest with you, was another one, and we told Ethan before others.

Becky: Yeah.

Mark: And we went through pictures and we just said how Daniel was special because of this. And Ethan was great, wasn’t he?

Becky: Yes before, before he was born we just showed him one or two photographs and said, “Oh, you know, Daniel’s going to be born, he’s going to have a gap in his lip, and it doesn’t hurt him. And when he’s a bit older the doctor will put it back together.” And he was like, “Oh OK.”

Mark: Hmm.

Becky: And that was it basically.

Mark: We did tell him he was special, didn’t we?

Becky: Yeah.

Mark: Then after he had the op, it was so funny, he said, “He’s not special anymore,” [laughs] as they do, they’re better than us really, the kids.

Becky: Yeah and, you know, he was just, oh well matter of fact, you know.

Mark: But we didn’t hide it away, did we then?

Becky: No.

Mark: We started, once we told people, we were quite…

Becky: And I was, I just thought would he be shocked or something? So before, when Daniel was born, we’re going on a bit now, then we just, you took a photograph on your phone, and then before Ethan came to see him, showed him the photograph, just so he would, you know, be aware of that.

Mark: And he asked questions, which is good, and we wanted him to, didn’t we, you know?

Becky and Mark did not blame themselves when they found out about their son’s cleft and were realistic about the risks associated with pregnancy.

Did they talk about, or did you ask yourselves at all about what the possible causes were?

Becky: I think because our first son was born with a birth defect, probably at that time like when he was born, I think I had experience of like, you know, feeling guilt, is there anything I’ve done with pregnancy? But I think that experience, well you know... it, you know, when you become pregnant you know, it’s a random thing, you know, when sort of, you know, something’s happened. I didn’t... I didn’t feel, you know, personally that it was anything that I’d actually done. Whereas compared to the first time just to compare it, you know, I thought, “Oh God, you know, is there anything, you know, that I’ve done?” There was no history of... of clefts within the family.

Yeah.

Becky: They asked about folic acid, which I’d taken.

Yeah, yeah.

Becky: I just was just aware, like you know I’m 37, that birth defects are more common when you’re older. But sort of the way your life goes sometimes, it’s not always ideal when you decide, you know, to have children. I did think you know, that why us? You know, I think, you know, sort of…

Mark: Everyone goes through that, don’t they?

Becky: Yeah I think you go through that experience of like, “Oh God, you know, is…” with Ethan you know, fantastic child, but, you know, he’s got some issues, he’s going to have to have some surgery later on, then we’d lost a pregnancy, now this on top of it. And I think, you know, you can get into that, that way of thinking sometimes, in terms of why us?

Becky and Mark had struggled to feed their son with a bottle and he was not gaining sufficient weight. The couple obtained a ‘Haberman’ bottle that has a longer teat and their son’s feeding improved immediately.

Mark: The cleft team, we spoke to them and we said that he was not feeding very well, and we’d 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 we’ve seen unbelievable differences: putting weight on, starting to sleep.

Becky: Yeah he went from below the 25th percentile I think he’s 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 there’s alternatives, wasn’t there?

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

Becky: Yeah.

Mark: …and we asked them and they said, “We’ve 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.

Becky and Mark’s son was born with a cleft lip and palate. The couple discuss how the cleft care pathway was explained to them and what specialists would be involved their son’s care.

And how aware have you been made of other services which will be involved in your son’s care in the future?

Becky: Yeah it was, it was really clear cut in terms of, you know, he’ll need hearing checks, the speech and language sort of service will become involved, and to get him registered with a dentist. I think it was quite a clear pathway. And I think they... I think you know where you are basically in terms of when he’ll have checks like, you know, in terms of his speech, like they’re going to give at certain ages, or if there’s concerns like, you know, anything, and the next thing is the palate, and he’ll have babble therapy workshop. And, you know, and so it’s quite, quite clear of how…

Is that babble therapy?

Becky: Yeah that’s right.

For his pre - speech?

Becky: Yes, yeah so I think you know where you are in terms of that. And I think you know…

Mark: And we know, for example, he’s got the palate operation to come, and we know that’s going to be a lot harder than lip.

Yeah.

Mark: Well even though cosmetically the lip is obviously a concern, because it’s what you can see, the palate is the one which is more painful and…

Becky: Yeah.

Mark: …it’s going to take a little bit longer for him to recover from.

Becky: Yeah.

Mark: So we are aware of timescales of things as well, aren’t we?

Becky: Yeah, yeah and I think, you know, it’s something like 50% need speech therapy, 50% don’t, so you’ve got that, you know, to go with. You think, right OK, he may or he may not. But you know, in the wider team I think they were quite clear about who is involved and when they become involved really and if there’s, you know, sort of in speech and language.

Mark: What we found so helpful as well is we sat down together, didn’t we, before all these meetings, and we did, we wrote a load of questions down.

Becky: Yeah.

Mark: And we put everything down we were concerned, and we asked them, didn’t we?

Becky: Oh even basic questions, because I was just like sort of, “Well can it ever come apart?" like, you know, and that might be a simple thing.

Oh OK yeah.

Becky: But he was just like... no question is a stupid question. But it was just like, to me, OK if he knocks it, or what about if the nose and?

Mark: But he was good, wasn’t he?

Becky: Yeah.

Mark: He said, “Look, just fire away, give me it all,” didn’t he?

Becky: Yeah I think it was, yeah, just like an A4 sheet of anything that…

Mark: Yeah.

Becky: …you know, you wanted to know.

Becky and Mark’s son was born with a cleft lip and palate and his speech was the next priority after his lip surgery.

Becky: I just... well there’s no now actual concerns at the moment. I think it’ll be interesting sort of when he has the... you know, because the lip is cosmetic, but in terms of speech, you know, development etc., you know, that’ll be quite interesting now to see as time goes on you know, how, how that sort of, you know, develops really. But I mean he’s just like any other seven month old isn’t he?

Mark: Yeah and whatever comes across now we can overcome, we know it’s not an issue now.

Becky: Yeah I just don’t think it’s ... you know, anything major, you know, if there are speech problems, you know, they’re things that can be, you know can be sorted really, you know.

Yeah.

Becky: And I just think, you know, there’s nothing major so far, is there, at all?

Mark: No.

Becky: You know, in terms of…

Mark: The main concerns we had firstly was the cosmetic with the lip, because that is something which is always seen.

Becky: Hmm.

Mark: And obviously if there were any other problems, wasn’t it?

Becky: Yeah.

Mark: But now we’ve gone through that initial stage, we feel more settled don’t we?

Becky: Yeah I think, you know, we’re hoping he…

Mark: We feel more that, look, whatever comes now we can overcome. And if it is speech therapy, well we can go through that.

Becky: Yeah.

Mark: There’s no issue with that.

Becky: You know, and…

Mark: Our other son will talk for him for a bit [laughs].

Becky: [laughs] Yeah definitely. Yeah and I just think, you know, the further operation with the gum, you know, we just, it’s just something, OK, you know, we’ll deal with.

Mark: We didn’t want but…

Becky: We’ll deal with it at the time. Because I think sometimes you can just take one thing at a time, and yeah.

Becky and Mark always felt involved in the decision making process when communicating with health professionals and felt confident in approaching their son’s surgeon.

Mark: He was great, wasn’t he? He was always there to talk to.

Becky: Yeah, yeah I think, you know, that, that was a..

Is this the surgeon?

Mark: Yeah brilliant.

Becky: Yeah very positive, somebody you can ask any questions like.

Mark: You could just talk to him.

Becky: Yeah.

Mark: Because some people you can’t which was our experience with our older son.

Yeah.

Becky: Yeah because I asked him about, you know, you could just say to him about the nose, I said, “You’ve done a fantastic job,” and it was like the nose was going to be OK. But, you know, I think it’s really important that you can say that. You know, because sometimes the medical profession, you know, you feel a bit of hierarchy, you know, that you might be criticising his surgical work. But it’s not though, you know, it was just like, “Right, what’s going to happen about that?”

OK it’s good that you felt able to say it,

Becky: Yeah.

…to speak to him about it.

Becky: Yeah, yeah definitely, yeah.

But in the stages prior to the operation did you feel that you were involved in that process, did you feel there was a dialogue with the professionals or?

Becky: Yeah I think yeah, I do. I think sort of... I suppose having a child previously and there I think, you know, you can advocate, and I think you as a parent, you know, you need to be involved in that process as well. And I think perhaps, you know, if I’m not sure about something, the type of people we are, we ask questions don’t we?

Mark: Yeah.

Becky: And I’d just say to all parents, at the end of the day you want what’s best for your child and, you know, if you need to check something out. Because I just think there’s no point in me going home and worrying about it. You know, when we found out about the heart defect it was like, OK, you know, I just got on the phone then to the teams like, you know, “Oh what does this mean? Do I?” you know, and I think, you know, you just need to, to check things.

Mark: And it is making sure you realise there is support there and you’ve got to ask if you’re unsure of anything.

Becky: Yeah.

Becky and Mark say that looking for information on the internet can be misleading and advise looking at recognised sites such as CLAPA. They also advise to look at ‘before and after’ images of babies that have had cleft surgery.

Mark: Well my biggest advice would be don’t go on the internet like Beck did, which I know for some situations you could find it reassuring, but it did throw up a lot of other things. The CLAPA website was great for the photos, because it is nice to see before and after, because you want to know what you’ve got to go through.

Becky: Yeah, yeah.

Mark: You know, and it’s it was nice there. But obviously just go into sites which are recommended, not sites which are just made up by people, because they can be quite negative.

Becky: Yeah, yeah. And my advice would be just to go with your emotions, if you’re feeling, you know, to go through like, you know, you probably when, if you have a diagnosis, is to go with those feelings. You know, sometimes you know, that shock, that loss, just to let it, you know, just to, to come over you and just and deal with that. And even if you’re having, you know, really negative thoughts, I think you’ve got to go there sometimes.

Mark: Yeah you have to.

Becky: You know, if you’re feeling angry, to go there. Because I think, you know, it’ll come out in other ways otherwise. But just to recognise, “Yeah, I’m feeling like this,” but at the end of the day, you know, from, you know, it’s not a major thing, it can be sorted. And, you know, to write things down if you’re not sure about anything. But it’s not, it’s really not such a big deal. You know, from the initial diagnosis you think, “Oh my goodness,” you want your child to be... sort of normal or perfect, but what is, but it’s stuff that can be dealt with. And it’s, I think from…

Mark: Yeah it can all be overcome.

Becky: It can be, it can all be, you know, overcome really.

Mark: But like ask these health professionals, because they are there for support. And don’t be afraid, however stupid the question is.

Becky: Any stupid question, some of the questions I’ve asked.

Mark: Write it down, you know.

Becky: Was just thinking, but I thought, no, if that’s…

Mark: But he didn’t think they were silly, were they?

Becky: Definitely not.

Mark: He was, you know, very good, you know.

Becky: Yeah.

Mark: “Please just ask.”

Becky: Yeah.

Mark: And keep annoying them. Because we do, we ring up with any question at all, don’t we?

Becky: Yeah and sometimes sort of, you know, I know with the CLAPA website they’ve got things like parent contacts information if you... I didn’t personally use that but, you know, for some people that might be useful. But, you know, sort of or even speaking to people, you know, like the local team can put you in contact with people.

And you know, the nurse, seeing photographs before and after, or speaking to families like say with the feeding concerns, different things like that, you know, probably families who have experienced it, they’ve been there, and they probably have come up with a, you know, a solution and you know, it’s to gather that information sometimes, isn’t it?

Mark: Yeah definitely.

Great OK. And, sorry, just to go back to the written side of information.

Becky: Yeah.

What kind of written information would you like to see at that point of diagnosis?

Becky: I just, I think it was just like perhaps a simple leaflet would have been helpful. Because like once we first had the diagnosis, it’s like sort of because I think sometimes at that particular stage, all according, you could be perhaps a bit too overwhelmed with too much information. But just something simple about like, you know, should you need to contact somebody, like perhaps a website with some, you know, information on which is like recommended, somebody to contact. Or like sort of some of the most common questions, just like sort of on the leaflet, which is something quite basic. You know, you’ve had a diagnosis, what is it you know, what can be done about it? And just basic stuff at that stage I think would be useful.

Mark: But also I think visual pictures as well.

Becky: Yeah, yeah I think

Mark: Because the pictures were the best thing, because the hours we spent looking at before and after photos…

Becky: Yeah I, when we had…

Mark: …trying to make comparisons to what we were having.