A-Z

Cleft Lip and Palate

Birth and Bonding

About 1 in 700 babies in Europe are born with a cleft lip and/or palate*. 

It is common for expectant mothers and fathers to be anxious about the birth of a baby diagnosed with a cleft lip and some parents expressed concerns about their ability to bond with a baby that might look different.

However, some babies only have a cleft palate and this can be diagnosed pre-natally by a 3D scan but is usually diagnosed by health professionals after the baby is born. For many parents it is a shock to have a child born with a cleft particularly if it was not diagnosed before birth.
 

Mary was concerned about bonding with her son who had a pre-birth diagnosis of cleft lip. When the baby was born Mary’s fears disappeared and she saw him as her beautiful son.

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Mary was concerned about bonding with her son who had a pre-birth diagnosis of cleft lip. When the baby was born Mary’s fears disappeared and she saw him as her beautiful son.

Age at interview: 46
Sex: Female
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I think, you know, it did cross my mind, I was thinking, “How will I bond, will I have any problem in bonding with the baby?” I was, I was a bit worried. I thought, you know, “You don’t know, how will I find the cleft? You know, the baby looks very different from other babies,” so I was worried about that. But, you know, after we saw the team, after we’d spoken and looked at the pictures, and we felt assured and we, you know, that’s... when the baby is born, I didn’t see the cleft; I just saw him as my, as, sorry, our baby.

Yeah.

You know, all these worries, all these fears what we had they weren’t there. I saw him as my baby, I saw him as my beautiful baby. He had a, I had a quite reasonable easy labour, so that probably did help. He was born very quickly; I had an easy labour. I went to the hospital, he was two weeks overdue actually.

Oh right.

So I went in to a check-up on a Sunday and he was going to be induced on the Monday, but he was actually born on that when I went to the hospital, on Sunday very quickly. So that was easy labour. And when I saw him, he was just really beautiful, you know, he was: we loved him from the moment we saw him, and [son’s name] that he was a healthy baby that, you know, when they check him out and he said, “There is not any other problem, you know, he’s you know, just a cleft.” And we had very good support at the hospital then you know, they... we had extra there, the labour room, they had on call like obstetrician, paediatrician, everybody was there just in case so we felt the whole time reassured. And the labour was, yeah, was quite, you know, with the support there, with the midwives, they are very, very good, they put us... they even gave us the single room after the baby was born. They said, “Would you like a, you know, single room?” So, yeah, bonding, once he was born there was, you know, there was no issues. 
 

Rebecca and Russell explain how their daughter was taken to the Special Care Baby Unit when it was discovered she had a cleft palate at birth.

Rebecca and Russell explain how their daughter was taken to the Special Care Baby Unit when it was discovered she had a cleft palate at birth.

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Rebecca: They took her away up to the... special care baby unit.

Russell: Hmm, hmm. Hmm, hmm.

Rebecca: Took her up to special care baby unit, and that’s where she stayed overnight there, and I was just put in a ward. And then we got to see her the next day, didn’t we?

Russell: Yeah it just kind of all happened.

Right.

Russell: It was really quick.

Rebecca: Yeah.

Russell: We left here just before midnight, got to the hospital and six hours just kind of flew by. And then it was two hours trying to get her to feed. And you were getting really tired and so…

Rebecca: Yeah.

Russell: … was [daughter’s name]. And that was when the nurse tried to calm her down, and they found it.

Rebecca: Yeah. I was completely, I didn’t... I just looked at her and she was just my baby, and I didn’t... I didn’t feel upset or anything like that, not at all. When I first got told I was still kind of overwhelmed with, “Oh my God, I’ve got my baby [laughs].”

Russell: And they never, they never really explained too much what it was until we met one of the specialists, and I think that was about four or five o’clock in the afternoon.

Rebecca: It was a speech therapist.

Russell: Yeah, yeah.

OK.

Russell: And that was kind of when we were really told what had happened and... and what to expect over the coming months. But they were great, weren’t they?

Rebecca: Oh yeah all the staff were absolutely brilliant.

OK.

Rebecca: Absolutely fantastic.

So just coming back to when you said they took your baby away, how did you feel about that at the time so soon after the birth?

Rebecca: I was exhausted at the time, but I was... I was kind of apprehensive, I think. But then I was like, “I want what’s best for her,” so I was OK, because they did say I would get to see her in the afternoon, so that kind of calmed me down a bit. But being away from her was difficult, was really difficult. Because I did get to see her that afternoon, but then I went nearly 24 hours after that without seeing her.

Yeah that’s quite a long time.

Rebecca: And that was really difficult, because the next day Russell came in to obviously see us both, and he had to come up to where I was first, and I was just crying. Because they gave me two pictures of her, and I was like, “But I want to be with her, and she’s alone and I’m not... I’m not there to help her.”

Russell: Yeah nobody seemed to offer to take her down either.

Oh.

Rebecca: I think that was the only time I really was properly upset. 

Babies born with a cleft lip and/or palate can have gaps in their lip on one side only (unilateral) or on both sides (bilateral). Most are born naturally in hospital; home births are not encouraged if it is known that a baby has a cleft lip so that a paediatrician can check the baby early for additional problems such as a heart murmur and other associated complications such as cleft palate.

After the baby with cleft is born a Clinical Nurse Specialist (CNS) will visit the family within 24 hours if in England and Wales. Occasionally a diagnosis of a cleft palate is missed by health professionals (See ‘Late diagnosis of cleft’). 

In rare cases the baby will be looked after in a Special Care Baby Unit (SCBU) – this is usually because the baby has feeding problems. In the SCBU the baby will be fed by mouth unless it is premature baby or has a syndrome – if so, a naso-gastric tube will be used (a tube that goes through the nose into the baby’s tummy; see ‘Feeding a baby born with a cleft’). In rarer cases a baby born with a cleft may have breathing problems and /or suspected associated conditions (Pierre Robin Sequence, Stickler syndrome) and these will also be looked after in SCBU. 
 

Iva explains how her son was born by forceps following an exhausting labour and discovering he had a cleft lip only.

Iva explains how her son was born by forceps following an exhausting labour and discovering he had a cleft lip only.

Age at interview: 29
Sex: Female
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So it was natural birth with forceps, if this is a natural.

Yeah, yeah.

But still it’s, yeah, it was.

OK.

Yeah they were hesitating because I didn’t, I didn’t have very strong contractions, so they were hesitating should they do C-section? But I was very exhausted at the end so they were hesitating C-section or... and they just left, left me for a few hours, the most horrible hours [laughs] in my life. It was overall 30 hours everything.

Very complicated, yeah, at the end I was just like dead.

You must have been exhausted?

Yeah I was absolutely exhausted. I was saying, “Just take the baby out please, [laughs] I just can’t anymore.” And they, at the end, hmm one doctor came and said, “Yes I will do forceps.” And I was very happy that, at the end, something will be done just to get the baby out. And yeah he was born and at the beginning, I mean after he was born he was taken, you know, for wee check-up, and I was asking everyone, “How, how is the cleft? How is... how is the cleft?” I was just asking this question, “Is it a big one? What can you see?” And my husband was there as well. And he [husband’s name] because he was sitting here next to me and I was just asking…

Your husband saw him first?

Yes, yeah and he said, “It’s not a big one, it’s not a big one.”

OK.

And they gave it to me and I saw that it’s just like a line here. And I was like, “Oh,” I was saying to everyone, “I am so happy, thank you very much everybody for everything, and I am just so happy, so happy.”

Yeah.

So yeah, it sounds as though it was causing a lot of anxiety?

Yeah, yeah, yeah, yeah, yeah I didn’t know what to expect. But when I saw that it’s just like a line here, it wasn’t like a big gap, it was just like a line, and after that even I saw that it’s not even going up to the nose, it, it’s just…

OK so

…till the middle maybe here. So I was really, really happy. And I asked them, “Can you check the palate as well?” But it was during the night, they, I think they, they didn’t have…

They didn’t do it immediately or?

There was one person there, he said he checked and in his opinion the palate is fine. But he said, “I am not a specialist. Tomorrow you will have…”

OK but he was a doctor though?

I think so.

Yeah.

I really…

OK.

But he said, “Tomorrow you will, he will, the baby will have more thorough check and you wil ... they will say for sure. Because I am, I’m... but I think, in my opinion, he’s fine,” he said. And I was very, very happy.

Reassured?

Yeah it was just... overwhelming [laughs] experience.
 

Della had a difficult birth due to complication and when her daughter was born she was taken to the Special Care Baby Unit because she had a small chin. Her daughter was later diagnosed with Pierre Robin Sequence (PRS).

Della had a difficult birth due to complication and when her daughter was born she was taken to the Special Care Baby Unit because she had a small chin. Her daughter was later diagnosed with Pierre Robin Sequence (PRS).

Age at interview: 27
Sex: Female
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And then when she was born there was a lot of people in the room, and she had a cord round her neck, her heart rate was dropping, it was quite low: they thought they were going to have to do a C Section. So they had a consultant in the room, and like the thing at the back to put the baby on when she was born to make sure everything was OK with her breathing. And immediately I heard them say, “She’s got a very small chin.”

Right.

And I was thinking, “She’s a girl; she doesn’t want this big sticking out chin.” I didn’t understand what they meant.

And then I just heard the midwife shouting at the doctor in the hallway saying, “If you’re taking the baby away to special care you need to go and speak to the mother about it.”

Yeah.

And at this point I’m a bit confused; I don’t know what’s going on. All I can hear, he comes in and says, “She’s got a very small chin, we need to get her to the special care unit.” But you don’t understand. You can’t imagine what could be that bad [laughs] about her chin. My sister shouted at them and made them let me hold her, but it was literally for a second. I didn’t get to take anything in, I didn’t notice anything, and they’ve just taken her straight away. And it was about an hour or so later that a doctor came to speak to me and he just explained she had a cleft palate and a small lower jaw. And obviously at this point I thought, “Oh my dad had a cleft palate, so that’s fine, I know that, you know, there’s nothing wrong. She’s not going to die or anything. It’s not major.” And that was all they said. They literally went straight away again.

Yeah.

And I was left, I think it was three and a half hours before I got to see her, because I’d had an epidural so I couldn’t walk, and the midwives were busy dealing with other people. And when I did get to go and see her, the first I thought was, “She has no mouth,” because her jaw was so far back I couldn’t see her mouth at all.”

OK yeah.

I thought, “How am I going to feed her? This is really scary.” And then... obviously later on I saw her crying and that, and it was like this massive relief: she did have a mouth; there was something there. Her cry was very funny: it sounded like she was going, “Arragh, arragh,” and that was the first thing I heard when she was born. And then... I had... the next day the, the consultant came to speak to me and explained what PRS was, and he brought me this page out of a really old medical book, which was the only thing he could find, a photocopy. And it was just like, “I’m trying to find you a picture to prove that her chin will come forward. I’m trying to find you, you know, something a bit more helpful than this,” but they didn’t have anything.

Totally unprepared then?

Yeah because it’s rare and they’d never seen it, I suppose. And at this point I could see why her scan…

What sort of hospital were you in at the time?

The local hospital here.

OK hmm.

And she was kept here; she was managed here the whole time. The cleft nurse came out the day after she was born and that’s when a bit more was explained to me, that because her jaw was small, her chin, her tongue was also small, and it would cover her airway. There was a lot of noise when she was breathing. And they explained she had to be nursed on her stomach; she couldn’t lie on her back because it would drop back and block her airway. There was a feeding tube, so I was explained she wouldn’t be able to suck very well, and we were given the squeezy bottles to feed her with.

Having a baby taken to SCBU can be distressing for new parents but despite the shock of being separated from their new baby parents who have a child born with a cleft lip and/or palate still have lots of opportunities to bond with their new baby. 
 

Natalie’s third child was born with a cleft lip and palate. Natalie was relieved when he was born and was able to bond with him.

Natalie’s third child was born with a cleft lip and palate. Natalie was relieved when he was born and was able to bond with him.

Age at interview: 49
Sex: Female
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OK is there anything else you wanted to say around that, around the birth and your adjusting?

No I, I, yeah, yeah... well obviously it was... well when he arrived I think, you know, there was an overwhelming sense of relief that it was the cleft and the cleft palate and, you know, everything else seemed to be [laughs] intact, bless him.

OK yeah.

So yeah that was a huge sense of relief I remember you know, and I remember the birth, well the birth was fairly straightforward like my other two have been, I was really lucky.

Yeah.

And it was a massive sense of relief and, and... yeah I mean he arrived and you just think, “Well yeah... love him just the same as the others, looks a bit different, but yeah.”

OK.

Yeah, yeah and you get, so quickly get used to the cleft, the look of them and the, it’s amazing.

OK sure, yeah that’s interesting, I was going to ask you about that.

Yeah really so easily, so quickly, so... I don’t know, it’s interesting as you know, I suppose it’s like, you know, you just hopefully, I know it doesn’t happen always, hopefully you bond with your baby whatever.

Parents are allowed spend time with their babies on the SCBU and shown how to feed their baby by a specially adapted bottle or, sometimes, a naso-gastric tube. Most parents we spoke to felt well supported by the clinical nurse specialists, midwives and other health professionals working in the SCBU. However, some find this aspect of care more difficult and don’t always feel comfortable when they go to the SCBU.
 

Rebecca and Russell’s daughter was kept in the Special Care Baby Unit and the couple missed out on feeding and changing their new baby.

Rebecca and Russell’s daughter was kept in the Special Care Baby Unit and the couple missed out on feeding and changing their new baby.

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Rebecca: If I’m honest... it did to begin with, didn’t it? We came home... I had her on the Monday, and we came home on the Thursday, and the week, the first week of us being home was, it was really difficult. I couldn’t understand why she was crying and I was... I was scared to go near her and... all these things. And the midwife was like, “It’s completely natural,” and, you know, I think they call day five or six or something the weepy day, or something like that.

The weepy day?

Rebecca: Yeah the weepy day, that’s what I got told, the weepy day [laughs]. But no, everybody was lovely. And then I kind of snapped out of it after about a week, didn’t I?

Russell: Hmm, hmm.

Rebecca: After a week I was like, “This is just wrong. You know, I’m so lucky that she’s perfect, to me, absolutely perfect.” And the feeding was going brilliantly.

Yeah.

Rebecca: She was just... she was doing really well. So... it did affect initially that I was... that first week of us being home with no midwives to help me or anything like that was hard.

So you were totally on your own and no one came to visit you at home or?

Rebecca: No I mean people did come to visit us with the new baby, but it was just... 

Yeah but professionals I mean.

Rebecca: Yeah the professionals came after a couple of days, wasn’t it?

Russell: I can’t remember. I know... 

Rebecca: Or was it a week? I think after we’d been home a week, a week and a bit possibly, the cleft specialist came out to see us.

So it’s quite a long time, a week, isn’t it?

Rebecca: Yeah but she was always on the other end of the phone, she was absolutely brilliant.

Oh OK you had the phone, telephone contact?

Rebecca: Yeah if I needed it. But I didn’t... I didn’t feel that, I didn’t realise at the time that... what I was feeling was because ... I hadn’t had the initial like 24 hours, you know, just seeing her and spending time with her.

Because I think we were only able to go in for a couple of hours before she was getting tired and needed fed by the tube again, and things like that. And I mean I didn’t even change her first nappy. You didn’t either.

Russell: No.

Rebecca: It was, she was taken away, so the staff did that. And it’s like... it was hard because it was like, oh, you expect all these things and... 

So you had a lot of expectations which?

Rebecca: Yeah just the normal things, like changing the first horrible nappy and trying to... I really wanted to try and breastfeed her, and I couldn’t, and that took a while to get used to, but then... I was fine.

Russell: But you did... you did really well though, you need to remember.

Rebecca: Yeah [laughs].

Through conducting our interviews with a range of mothers and fathers of children born with cleft lip a visible difference at birth does not appear to taint the joy of birth and the ability to bond with the baby.
 

Safiya was worried how she would react to seeing her son knowing her would have a cleft lip.

Safiya was worried how she would react to seeing her son knowing her would have a cleft lip.

Age at interview: 21
Sex: Female
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And it was so weird because all through my pregnancy I was thinking I might look at this baby and be like, “Oh my God, like look at his lip,” as horrible as it sounds.

Yeah.

But when he came out it was like I didn’t even notice his lip.

OK.

I looked at him and didn’t see his cleft lip.

That’s interesting, yeah.

Yeah, it was really weird: I just didn’t see it. He was just my baby. 


* World Health Organisation. Global Registry and Database on Craniofacial Anomalies Eds:
Mossey PA, Castillia (2003). WHO Reports, Human Genetics Programme: International
Collaborative Research on Craniofacial Anomalies, WHO publications, Geneva, Switzerland

Last reviewed June 2017.
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