Cleft Lip and Palate
Causes of cleft
After a diagnosis of cleft lip and/or palate it is both common and normal for parents to ask themselves “Why did it happen to us?” Only a few of the families we spoke to had other family members who were born with cleft lip and/or palate. However, most knew other families where someone had been born with a cleft before they received their own diagnosis. With time, most families were able to come to terms with the fact that their baby would have a cleft and that it was not due to any fault of their own or their lifestyle, but due to natural circumstances that were beyond their control.
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?
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.
Healthcare professionals do not know exactly why some people are born with a cleft lip and/or palate. However, there is some evidence of a genetic link where cleft lip and/or palate occurs several times in one family. There is also evidence that cleft occurs more frequently in some racial groups than others. At present, it is not known whether tobacco, alcohol and illicit drug use increase the risk of having a baby born with a cleft lip and/or palate.
In the families we spoke to many mothers questioned their own behaviour even if they didn’t drink or smoke during their pregnancy. Some families experienced distress despite the fact that the cleft was probably not caused by anything under their control. On a positive note, most families took reassurance from the health professionals looking after them that the cause of their child’s cleft was not due to any fault of their own.
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, we’ve 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 we’ll 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.
A few mothers had negative reactions from people they knew who suggested that they must have used illicit drugs or drank excessively during pregnancy. Understandably, this caused them lots of unnecessary distress as these beliefs have no basis.
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 there’s 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 there’s a lot of people that ask questions as well, because it’s not as widely common as…
Rebecca: Yeah.
Russell: …as other issues.
Sometimes parents are offered genetic testing after a child is born with cleft lip and/or palate to see whether the family is at risk of other related conditions. Families may also be offered genetic counselling if they are considering whether or not to terminate the pregnancy. Some families felt they would have liked to have had genetic counselling but it was not offered.
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, there’s 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 we’re facing actually we can... we’re probably quite well placed to deal with that.” But by the time we kind of got the sort of all-clear on that we’d... yeah, she was developing really well and we sort of knew that that... wasn’t really anything.
Last reviewed June 2017.
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.
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.
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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?
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.
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.
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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.
In the families we spoke to many mothers questioned their own behaviour even if they didn’t drink or smoke during their pregnancy. Some families experienced distress despite the fact that the cleft was probably not caused by anything under their control. On a positive note, most families took reassurance from the health professionals looking after them that the cause of their child’s cleft was not due to any fault of their own.
Safiya’s son is of mixed race and she was told that cleft is more common in babies with her son’s ethnic mix. However, she was also concerned that her own behaviour may have caused the cleft.
Safiya’s son is of mixed race and she was told that cleft is more common in babies with her son’s ethnic mix. However, she was also concerned that her own behaviour may have caused the cleft.
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I forgot to ask you whether you had any thoughts about what was the cause of your son’s cleft?
They said that it can just happen.
They also said… actually I don’t think it was the hospital, someone said to me that it can be quite common where a child has a mix of black and Asian in them. And my little boy is... he’s half white, he’s quarter black and quarter Asian.
Right.
So someone said to me it can be quite common with kids with that mix. Other people, like things I was reading on the internet said it can be common if you smoke, sorry, if you drink alcohol in early pregnancy.
Hmm.
... I think some said if you smoke in early pregnancy.
Right.
... If you do drugs in early pregnancy.
OK so it’s kind of a mix of like his genetic make-up and…
…and what a mother does, yeah [laughs].
So was that a cause of concern for you at all?
No, I mean... before I found out I was pregnant... I drank a little bit, which... that was a bit of a concern to me, because I thought, “Oh my God, what if it’s my fault? What if it’s because I drank alcohol when I was like early weeks pregnant and he didn’t develop properly?” But... I mean the nurses all said like... that’s... I don’t know whether they were trying to make me feel better, but they were saying like that’s a rare sort of thing.
Millie and Michael understood the hereditary nature of cleft as both Michael and his father were born with a cleft lip and palate. The couple also had genetic counselling to consider the risk of a further child being born with a cleft.
Millie and Michael understood the hereditary nature of cleft as both Michael and his father were born with a cleft lip and palate. The couple also had genetic counselling to consider the risk of a further child being born with a cleft.
Age at interview: 20
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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, we’ve 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 we’ll 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 and Russell discovered that a local pharmacist believed that their daughter’s cleft was caused by Rebecca using drink and drugs during pregnancy.
Rebecca and Russell discovered that a local pharmacist believed that their daughter’s cleft was caused by Rebecca using drink and drugs during pregnancy.
Age at interview: 23
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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 there’s 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 there’s a lot of people that ask questions as well, because it’s not as widely common as…
Rebecca: Yeah.
Russell: …as other issues.
Rhiannon had genetic tests but these did not help to identify the cause of her daughter’s cleft palate.
Rhiannon had genetic tests but these did not help to identify the cause of her daughter’s cleft palate.
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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, there’s no family history?
No family history of it at all, yeah.
Kendal’s mother Suzi wanted to know the cause of her daughter’s cleft but was too busy looking after Kendal to worry about the cause.
Kendal’s mother Suzi wanted to know the cause of her daughter’s cleft but was too busy looking after Kendal to worry about the cause.
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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.
Jenny and her husband had blood samples taken to find out if their baby daughter had any other genetic conditions associated with having a cleft. The tests were negative.
Jenny and her husband had blood samples taken to find out if their baby daughter had any other genetic conditions associated with having a cleft. The tests were negative.
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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 we’re facing actually we can... we’re probably quite well placed to deal with that.” But by the time we kind of got the sort of all-clear on that we’d... yeah, she was developing really well and we sort of knew that that... wasn’t really anything.
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