Cleft Lip and Palate

Diagnosis of cleft and breaking the news

The initial diagnosis of a cleft lip or palate usually happens when the expectant mother has a scan at approximately 20 weeks of pregnancy. The ultrasound scan is generally conducted by a trained sonographer who can identify the appearance of a cleft lip. While an ultrasound scan can detect the image of a cleft lip it cannot reliably detect a cleft palate. Sometimes further scans such as MRI and 3D scanning are offered to families, particularly if there is a concern that the baby will also have a cleft palate and more detail is required.

Paul recalls how he and his wife Michelle found out that their son had a cleft lip and what his future care would involve.

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Age at interview: 33

Sex: Male

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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.

Safiya met the specialist cleft team before her son was born and they explained to her what the future care of her son would involve.

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Age at interview: 21

Sex: Female

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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 he’s 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 he’d 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.

It is common for a sonographer to contact a senior sonographer or another health professional (sometimes a consultant paediatrician, obstetrician, or surgeon) when a pre-natal scan shows a potential diagnosis of cleft lip and often a specialist scan is then offered. A senior health professional will break the news to the parents at this appointment. Some families we spoke to were referred to genetic counselling services particularly if there was a family history of Pierre Robin Sequence, Stickler syndrome, 22q11 deletion syndrome, or a history or risk of other associated genetic conditions. However, these syndromes are not usually detected antenatally.

Parents who received the diagnosis of cleft at their scan appointment felt that there was often a lack of empathy and understanding about the reality of having a child born with a cleft lip and or palate. For example, conversations about the risk of the baby being born with a condition associated with cleft were not handled very well.

Natalie recalls how the sonographer handled the diagnosis of her sons’ cleft at her 20 week scan.

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Age at interview: 49

Sex: Female

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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 we’d 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 we’d 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.

Three families were asked to consider abortion. Not surprisingly this was a cause of significant distress: parents were asked to consider the life of their baby without having had time to understand the diagnosis of this non-life-threatening condition, its consequences, or to think about its impact. The standard of care for children born with a cleft and levels of public awareness are improving. For most of the parents we interviewed cleft lip and palate does not affect the quality of life of the child to the extent that they would have consider life to be not worth living.

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.

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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.

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Age at interview: 36

Sex: Male

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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.

In the time between the scan and the visit from the CNS, many parents try to find out more about cleft lip using the internet. This too can be distressing for families, particularly as the pictures found on the internet may be extreme or show more unusual cases of cleft. See ‘Diagnosis of cleft and impact on pregnancy’.

Some families said that they were given too much spoken information at diagnosis and this could be overwhelming. Others felt that they would like more information in the form of pictures and leaflets. Some suggested that information about well-organised and reliable websites such as the Cleft Lip and Palate Association or Changing Faces should be given out at this time.

Iva recalls how the sonographer detected the cleft lip and told her that it was a cosmetic condition and the gap in the lip could be closed.

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Age at interview: 29

Sex: Female

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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.

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.

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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.

After diagnosis at this stage of the pregnancy the sonographer or health professional should inform a Clinical Nurse Specialist (CNS): parents are usually then visited at home by the CNS within 24 hours of the diagnosis.

Last reviewed June 2017.
Last updated June 2017.