So I just want to ask you about when you first learnt about your son’s cleft lip and palate now. How you felt about that at the time, can you remember? I think your wife said it was at the 20 week scan?

That’s right, yeah. So at the scan they actually spotted, the nurse, midwife spotted something on the on the video and then she called someone else in, and then they had a look and then they told us. And then they we had to go and sit in another room for a bit. And then we, I think we met a consultant afterwards who kind of briefed us on what it was. And then we went for further scans and a 3D scan and an MRI scan and all sorts of things. But initially it was a bit of a shock because you don’t really expect anything. And then… but then after sort of thinking about it, and digesting it over the sort of course of a week or so I suppose it was just quite lucky that it’s nothing overly serious; it’s just cosmetic really. And there are some practical things, issues with it initially. But nothing, nothing sort of life threatening so yeah. So all in all, initially quite shocked, and then sort of got to grips, grips with it quite quickly hmm.

At what point did services get involved following the scan? Did someone come and visit you at home or talk to you any more about it?

Yeah before my little boy was born, I saw the specialist cleft team….I can’t remember exactly at what point, how far in my pregnancy I saw them, but I know it was definitely before he was born. And they helped with things a lot. They obviously had all the answers; that’s their speciality. So I could ask loads of questions. They told me… they gave me a sheet that had a plan on of the operation he would have from when he was born to when hes 20 years old.

So it was quite a long-term thing they explained to me. But they gave me all the information, which I felt like helped, because it helped me to sort of plan it in my head and get everything sorted in my head….They explained to me about hed have to have special bottles, and special teats and… that I’d have to feed him a different way. I couldn’t feed him like a normal baby like lying down: I’d have to sit him up.

So can you remember how that was communicated to you? Was it mainly through verbal consultation?

It was, it was a little bit tricky. Because my husband had gone out to… feed the meter, and it was obvious that the sonographer had detected something and she was a little bit edgy, and she didn’t want to say anything until my husband came back.

OK.

And he was gone for quite a long time, and in the end I think she just thought, Well I’m going to have to say something. So it was all a bit, it was all a bit uncomfortable really.

For her I think because she just, you know, she was waiting till he came back, but in the end didn’t, and so told me while I was there on my own.

Oh right.

So that was quite hard really in a way. Because then, you know, she told me, and then when he eventually did come back in of course I was fairly upset. He was, you know, My goodness, what’s happened? So she had to tell him, so the whole thing got repeated again.

No I mean at that point we sort of left the room where wed had the scan and were kind of ushered into this side room, and that was all a bit kind of like, Oh, you know, with no one with us, just sat there sort of, OK what, what happens now? Oh my goodness, you know. We probably weren’t waiting very long in that room but, you know, it feels like it’s forever. But fortunately well I don’t know whether that would happen as of norm, but we were, we were then taken through to, as I say, the foetal medicine department where I had a much more detailed scan.

OK.

And partly that was a good thing; partly not. Because those, that team of… people then sort of gave us… probably too much information almost, in the sense that we were told what other conditions

Right OK.

could go along with the cleft.

Right, the syndromes?

And that was pretty awful actually, because I mean I’d almost have preferred, but that’s me personally because I don’t… I suppose… I wouldn’t say I’m an ostrich, but I kind of, OK, I’m dealing with one thing here, I’m not sure I want to hear everything else.

I think if wed just sort of had that more detailed scan, we learnt the sex of the baby, which was quite nice in a way, I mean I wasn’t… didn’t want to find out having, you know, before that, but once we knew about the cleft I thought, Well let’s prepare for everything here in terms of that. But I’m not sure I then wanted to know all these other conditions which, you know, some of them were pretty, pretty dire you know.

Yeah the lady that was doing the check-up she, she started everything was fine, she was looking and she was saying, Nice and healthy, nice and healthy, and just at the end she, she became very concentrated and she stopped speaking and for maybe around 5 or even between 5 and 10 minutes she was trying to see his lip.

And when she said cleft lip I turned to my husband and I said to him, What does this mean? And he said in Bulgarian it’s XXXXX. And I was just, because I remembered just these pictures in my head, and I was just

So that must have been?

the most awful moment in my entire life.

Oh dear.

I was absolutely devastated. And she gave us a brochure with the image of a small boy, and actually his repair was really very nice. But I don’t know, I didn’t know then what I could expect.

What to expect hmm.

Yeah, yeah.

And so who gave you this information, was it the sonographer?

Yes the lady that did

who did the scan?

the scan. She said, Wait here for five minutes, she went somewhere and came back with the brochure, and she said, You will be called by a nurse, a specialist cleft nurse in the next few days. She will come and show you pictures. Don’t worry. Actually you have nothing to worry about because I told you your son is absolutely healthy. This is something cosmetic; it will be repaired. Don’t worry. But I was, but nothing could help in that moment really, I was just crying and crying and crying. And I told why.

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 shes 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.