The impact of a diagnosis of cleft on the pregnancy

Learning that your child will be born with a cleft lip can be a shock for parents. It can be difficult to understand what having a child born with a cleft will mean: what will the child look like, how will he or she feed and what treatment will he or she need? Many parents and families look for information on the internet when their baby receives a diagnosis of a cleft lip. However they can be overwhelmed by the pictures and stories of other families that they find.

There is also a great deal of uncertainty: the 20 week scan can only reliably detect that a baby has a cleft lip. However, further scans and genetic tests are sometimes offered at 20 weeks to see if there are any major chromosomal problems such as Down’s syndrome, Patau’s syndrome, and Edward’s syndrome.

Receiving a diagnosis at the 20 week scan can give parents a period in which to adjust to the prospect of having a child born with a cleft lip and/or palate. Although this can cause distress during pregnancy most parents we spoke to believed that the early diagnosis gave them time to prepare emotionally and practically. However support is available through the Cleft Lip and Palate Association (CLAPA) or locally through your cleft lip and palate service team.

There are also opportunities to meet other families expecting a child born with a cleft, or who have a child receiving treatment for cleft. CLAPA organise parent support meetings and families can also email others directly through the CLAPA parent contact regional directory.

CLAPA Facebook pages are useful if there is not a parent support group in your area. When parents look at the CLAPA website they can see ‘before and after’ pictures showing that cleft lip can be closed. In most cases families receiving a diagnosis of a cleft lip at the 20 week scan will be visited by a clinical nurse specialist (CNS) within 24 hours. The CNS will talk about how the baby will be cared for after it is born and the treatment that is available through the NHS.

Christie was reassured by a visit from the Clinical Nurse Specialist (CNS) where she was guided through the information available online.

Age at interview 41

Gender Female

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The cleft nurse came at around teatime. It was around, [name] got home, and he was at home when the cleft nurse came. And she came and she kind of gave us a lot more information and kind of sort of talked us through a bit more what to expect. And she also had so when I’m looking up online I see lots of children with cleft lips, looking sort of quite scary some of it, and what she had was before and after pictures. She had, Look, here it is, child born with cleft lip, looks pretty scary, this is what they look like three months later. I’m like, Oh well that’s kind of OK. And that was really helpful kind of going actually, you know, that’s can be fixed. Fixed, is that the right way of putting it? Or yes, the lip can be repaired. And she sort of talked us through, yeah, a bit more what to expect.

So you talked about this and they gave you more information, what was the quality of the information like, looking back now did it prepare you well, would you say, for the birth of your child?

Hmm yes I think so. I think, from that point, I felt quite supported and like I had a lot of so I had a better understanding of what it meant for the child in terms of sort of what challenges it might involve and how you might be able to cope with it basically. So it kind of, it turned it into more of a kind of a known challenge that, and you know, and ways of coping. So that was as far as I remember.

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Michelle and Paul used the CLAPA website and forum pages and contacted other parents about their sons’ diagnosis of cleft and a CNS helped to prepare them for the birth.

Age at interview 33

Gender Female

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We did have a look at the CLAPA website. And we had to order the bottles and teats and things from there.

And I had a look at the forums and… and things like that, which is where we got a lot of the information from, so like from other parents, I looked on that part of it.

So, yeah, but our cleft nurse, we were in regular contact with her during my pregnancy as well. There was a bit of concern about the Christmas period, because he was due on the 23rd December.

Oh OK.

And… then there would just be a nurse on call, so there was a bit of… yeah, a bit of an issue about whether or not anybody would actually be coming out, able to come and see us straight away. But he was born on the 2nd January, and it was the next day that they came to see us to make sure that he was feeding OK.

OK that’s great.

Luckily the hospital… that I had him… was a hospital that had previously done the surgery so a lot of the nurses that were there were aware of cleft children anyway, so that was quite nice.

OK.

So it means that there was a bit of a bit extra help from people that knew.

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The CNS will inform the families about the cleft service specialists that will be involved in their babies’ care. These include cleft surgeons, dentists, speech and language therapists, audiologists and sometimes, clinical psychologists.

The most important information after birth is how to feed the baby and when and how the cleft lip and palate will be repaired (See ‘Feeding a baby born with a cleft’ and ‘Cleft treatment pathway’).

If parents need to talk to someone about their feelings there are trained professionals who work within many of the teams (counsellor or clinical psychologist) that can offer emotional support to families. The CNS will know if there is emotional support in your area and will be able to arrange an appointment for you.

In rare cases where there is a chance that the unborn baby will have a genetic syndrome, doctors and other health professionals may advise parents to consider abortion, which can cause families distress.

Tamsin and Andrew were glad to have found out about their son’s bilateral cleft lip and palate at the 20 week scan. The couple also had to consider the possibility that their son would be born with an undiagnosed genetic syndrome.

Age at interview 29

Gender Male

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Andrew: It feels like you’ve got very little time to digest what’s being told to you, to really understand it, to, to then be able to move forward with that information and

Tamsin: make a decision either way, isn’t it? So

Andrew: Well it was making decisions either way, and also being happy with the way you’re going forward, I think. I think our midwife became… it got to a point where our midwife was going, You’ve got to actually now start enjoying your pregnancy and, and looking forward to the birth of your child, and things like that. Because you’ve got to kind of get over that stage at some point and look forward to having, you’re still going to have

Tamsin: a baby.

Andrew: an amazing little baby that you’ve got to look after and love and care for. And you’ve got to, I think definitely for the mother, it’s very different being the father, but you have that bonding with your child in the womb.

Tamsin: Hmm.

Andrew: and things like that. And there were definitely times through the pregnancy that, with everything that was going on, that could very easily be destroyed because, you know, we were thinking about… you know, some of the things we were having to think about, and almost detach yourself away from

Did you did you feel able to enjoy the pregnancy?

Tamsin: I would say no. And I think… I think that, that pregnancy will always be completely coloured. I’m very pleased that we found out before he was born though.

Right.

Tamsin: So I wouldn’t really have wanted it any other way. I mean bilateral, complete bilateral cleft lip is very obvious, I think. It looked obvious [laughs] to us anyway on all the, on the scans, even without a 3D scan it was, it was obvious that there was something not right there. So it would have been unlikely for them to have missed it. So I’m glad that we found out beforehand, because we could prepare ourselves. Even though, when he was actually born, we were obviously not prepared, [laughs] I think. But we could prepare ourselves as much as we could.

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Becky and Mark’s son was diagnosed with a cleft lip at her 20 week scan. They were grateful for further scans so that they could prepare themselves for the implications of cleft lip and palate.

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Becky: As you know, wed been sort of checked and sort of scanned throughout the pregnancy. So when it actually came to that scan, initially the sonographer sort of couldn’t, said, Oh, you know, the baby’s in an awkward position you know, we can’t see the baby’s face. So she said, you know, Can you move position? And then after a while, and they seemed to be taking for some time, she said, Can you go for a walk and come back in about half an hour? And even at that stage I just felt generally, you know, that the baby was awkward, they needed to see, you know, the face etc., but I didn’t… didn’t think at that particular stage that anything was actually wrong.

Mark: We had lots of scans before that, didn’t we, as well?

Becky: Yeah which I’ve just, yeah, just said about [laughs] yeah.

So at that point were you aware of cleft, did you have prior experience of children with cleft lips or palates?

Becky: Well I’m just sort of like sort of with previous pregnancies and how things, you know, can go wrong, had been just looking on the information leaflet sheet provided prior you go to the 20 week scan about what conditions can be actually detected, and the success rates. And I can just remember… seeing on that then that cleft lip, and I can’t remember the exact statistics but, you know, it was, you know, quite easy to see on a scan. And I think, you know.

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Most families are able to look back to when their child received a diagnosis of cleft and see their journey through the treatment pathway in a positive way.

Kerrey recalls how she came to terms with the diagnosis of her son’s cleft lip and how the good care that her son received put it in perspective.

Age at interview 27

Gender Female

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I just wanted to say that when you find out that your child’s going to be born with a cleft lip, possibly palate, it does feel like… the end of the world.

Yeah.

But… when you’re going, when you go through it, and as you slowly come to terms with it, and you go through… everything that comes along your way, you know, you have the surgery, and you see, you see them recover, and you just, when you come to the end of it, you think to yourself, Well I don’t know why I worried so much. Because… they really have… they really have looked after him, and he really is OK. And it’s normal to worry… it’s normal to feel… like it’s your fault, but everything will be OK.

Yeah sure.

And, you know, it’s just, it’s just good to know that. You don’t feel it at the beginning but… it comes to you eventually.

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(See also: ‘Emotional impact and support’, ‘Cleft treatment pathway’).