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, hes got some issues, hes going to have to have some surgery later on, then wed 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?

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 theres 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 theres nothing that you could have changed differently. But I think you still question yourself, I think.

So when did you first learn that your son was going to be born with a cleft lip?

Millie: We got, I went for my normal scan, didn’t I, because I found that I was pregnant quite late on. And then I had to keep getting scanned. And then they found out your history, didn’t they?

Michael: Hmm.

Millie: And sort of kept scanning me and scanning me, and sending me to specialist scans. And we went through a 3D scan in the end, didn’t we? And that’s when we found out [son’s name] had a cleft lip. But we didn’t, they didn’t tell us he had a cleft palate till he was born, did they?

Michael: Yeah, I knew… in the back of my mind when I heard the child 90% probably born with cleft lip, maybe palate, don’t really know to be fair.

Because you’ve got a cleft yourself?

Michael: Yeah I’ve had it, and my father’s had it, so I just assumed that it’d carry on within the family.

So did you have the cleft palate as well or just?

Michael: I had a slight notch just out my gum; I didn’t have the full palate.

So when your wife was pregnant, you did expect to have some cleft, or did you think it was likely?

Michael: Yeah I knew there was a very, very good chance of him having a cleft lip, maybe the palate.

Millie: Hmm I was the opposite. I kept thinking, No it’ll be alright, he won’t have one, didn’t I?

Michael: Hmm.

Millie: I was thinking it would be fine, but he did, didn’t he?

Michael: Hmm.

Did you get any genetic counselling at all at this point in time when you?

Millie: No we didn’t, did we?

Michael: No, weve just recently been through it, only the past few months, I believe. And that’s just to find out it’s just kind of like a national database where they can obviously medical research it, and then well find out, if we have more children, with they or will they not be born with it? And the same with if [son’s name] he has children, whether he will, you know, have kids with cleft lip and palate or not.

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 theres 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 theres a lot of people that ask questions as well, because it’s not as widely common as

Rebecca: Yeah.

Russell: as other issues.

Did you have any ideas about what the causes of the cleft might have been?

No. We did get [daughter’s name] had some blood taken for genetic tests to see if that was why she had it, but nothing has come back, so we have no idea why the cleft happened, it was just a one-off.

OK.

Yeah because it doesn’t run in either of our families.

Right, theres no family history?

No family history of it at all, yeah.

Do you have any ideas about the cause of the cleft palate?

Suzi: No, none at all. I asked and asked and asked and asked and asked, you know, because that’s the first thing that you think if you have a baby that isn’t perfect: Is it my fault? What did I do wrong?

Kendal: Well, yeah, is it genetic?

And did you go through that process, was there any?

Suzi: I tried. I got nothing. Don’t know.

OK and did it cause you any distress or anguish?

Suzi: At the time?

Not knowing?

Suzi: No, not really. I was too busy getting on with dealing with, you know, how we were going to… get over any problems that she may have.

And at what point was it confirmed that there were no genetic issues?

I think she was about six weeks old.

Oh right, so there was a few weeks of

Yeah so they took… they took blood from her while she was in special care. And I can’t… I can’t remember now when they… what the process was. I think what happened is they came back and there was… there was something a bit funny on one of her chromosomes. And I think it was then that they tested… my blood and [husband]’s blood. And then they found that I had the same thing, and because I haven’t got a cleft it… you know, it was sort of not cleft related.

Yeah.

And the way they explained it to me was that when they do the genetic testing they find so many odd little things that they don’t know what most of them or, yeah, don’t know what a lot of them mean.

Yeah it’s not well understood.

So a lot of it, they find these things but don’t know what they really mean in practise. But by the time we kind of had that all-clear, like we sort of knew it really. We I don’t… yeah, we weren’t really worried about that after the cleft nurse had kind of reassured us on it. And I think partly because my mum has worked with children with special needs, and for me working in healthcare, it’s kind of I’ve worked with people with special needs and kind of thought, Well if that… if that’s… if that’s kind of the scenario were facing actually we can… were probably quite well placed to deal with that. But by the time we kind of got the sort of all-clear on that wed… yeah, she was developing really well and we sort of knew that that… wasn’t really anything.