Safiya – Cleft lip and palate

Safiya is a mother of a 2-year-old son and is also a full-time student. Safiya’s son was diagnosed with a cleft lip at her 20-week scan, and he was born with a unilateral cleft lip and palate.

Safiya is a mother of a two year old son and is also a full-time student. Safiya’s son was diagnosed with a cleft lip at her 20-week scan and he was born with a unilateral cleft lip and palate. When Safiya was given the diagnosis of her baby’s cleft at the 20-week scan it was a great shock as Safiya had no experience of cleft lip or palate. The sonographer gave Safiya some leaflets and said that a specialist team would be in touch.

Safiya did a Google search and found lots of pictures of cleft babies which she found to be horrible experience. She felt unsupported as at that time she was still waiting to see the specialist nurse. As a single mother Safiya was worried that she would not be able to cope with a baby that needed medical attention. However, when Safiya told her friends about the diagnosis she found them to be really supportive and helped her research and find good information about having a child with a cleft.

Safiya’s son had a normal delivery and Safiya did not notice his cleft lip at first. He could not breast feed because of the cleft in his palate and Safiya had to learn how to feed her son with special squeezy bottles. This process was very time consuming and exhausting for Safiya. Safiya found feeding particularly difficult when outside of her home.

Her son was due to have his cleft lip repaired at 3 months but it was pushed back to 6 months due to a cold. Safiya was really nervous before the operation but it all went ok. After the operation Safiya’s son looked “like a different boy” as she had become so used to him with his cleft, and this took some getting used to. This delay of the lip repair operation meant that his operation to repair his palate did not happen till he was 9 months old.

Unfortunately, the palate repair operation was not a success as it split shortly after the operation and had to be redone. Safiya was told that this was quite rare. Despite this Safiya has a good relationship with the cleft specialist team and is confident that her son will continue to make good progress both socially and developmentally. Indeed, he speaks well and is well socialised with other children.

Safiya found the process of feeding in public difficult because of the position she had to keep her son in to bottle feed efficiently.

Age at interview 21

Gender Female

I remember some points it would take me nearly an hour to feed him about four ounces, and that’s not a lot of milk. A normal baby would drink that in… not even five minutes [laughs] probably.

Really?

And it would take me about an hour sometimes to get it down him because… it was just so hard. And it… sorry [laughs].

That’s alright, yeah.

It was hard as well… I felt like I couldn’t take him out. Because with a… say a normal child, you can kind of just lie them in your arm, stick a bottle in their mouth, whereas with… my little boy I had to… sit him up, I had to prop him up, and like my arm would ache where it took so long. So I’d have to… normally I’d have to like sit with my leg up like this, prop my arm against my leg. But like you can’t really sit like that in public, you know, when you’re out in a restaurant or something. People will look at you and be like, What’s she doing?

Yeah.

So I found it a bit hard to take him out. I took him to a shopping centre when he was… probably about two months, and it was just… it was a disaster. I ended up crying and bringing him home. Because I was in MacDonald’s trying to feed him, and I couldn’t… sit him up enough to feed him, and it was just horrible, it was an awful experience.

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Safiya’s son had his cleft lip and palate repaired but she was aware that he may require future treatment to improve his speech and hearing.

Age at interview 21

Gender Female

And have they talked to you about orthodontics at all?

Yeah they’ve given me a lot. They’ve been really good….Care with teeth, I mean even… the normal dentist that we go to
Yeah OK, yeah.

Has given me a lot of advice about cleft lips….They’ve said that he has to use adult toothpaste because it’s got fluoride in to protect his teeth.

Yeah.

They said not to give him loads of sugary stuff because kids with clefts are prone to tooth decay.

And… so I try and give [son’s name] like a really good diet. He loves his fruit, which is good, so I mean rather than snacking on sweets and chocolate hell snack on fruit. And I try not to give him juice: I try to give him water.

Yeah.

So I mean his diet is quite good. He also has to see a speech therapist every few months because his cleft palate can cause him to have speech difficulties. And he also has to see a hearing specialist every few months because kids with clefts are prone to glue ear.

Were just waiting for… a follow-up appointment at the hospital because [son’s name] has got some liquid in… liquid in his ear, and they’ve said that it could lead to glue ear.

OK.

…But despite him having the liquid in his ear, I don’t think hes got any… problems with his hearing, personally, but were just waiting for an appointment at the hospital so that they can see him.

OK so theres quite a lot of different specialisms getting involved then?

Yeah, a lot of appointments to go to, a lot of things to like keep on top of.

Yeah sure. How do you feel about that? Are you managing with that?

Yeah I manage with it….I think obviously now hes a bit older and… quite obviously I’m older [laughs]…I’ve had to like grow up a lot and… be a lot more sort of independent. And… I mean he doesn’t know any better at the minute, hes obviously still quite young, he can’t question me like, Mummy, why do I have to go to all these appointments I think… it could maybe be a bit hard when he gets to that age, but at the minute… he just, he doesn’t really know any different. So…

So when he started to begin to talk, what was that like?

He never had any issues with his speech, he was lucky.

Right OK.

Well saying that, before he had his second palate operation he… could only make certain sounds and could only say certain words.

OK.

He could only say M’ words and sounds, N’ words and sounds, and… I think it was Y’ words and sounds, like yes and things like that….but…after he had his second palate operation it was like his speech just…propelled, he just started coming out with all these words. I noticed the difference within the first week of him having his second palate operation: he was like saying sounds that he couldn’t say before. So I noticed a big difference.

OK interesting, yeah.

Yeah.

OK so are you anticipating any major difficulties at all in that area?

I don’t think so. I think his speech is fine.

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Safiya’s son had to have his cleft palate closed again as it had split after the first surgery.

Age at interview 21

Gender Female

So you mentioned that the palate had to be repaired again?

Yeah.

So what caused that, the initial repair to fail?

They said they didn’t actually give a reason; they said it happens to about one in a hundred children, I think they said.

They said it can just happen, sort of the stitches can be done too tight and they can… split.

Right hmm. So how long was it after the first operation that it split?

I think I noticed about two weeks after. I remember [son’s name] was crying, and I put him down on my bed and I looked in his mouth, and I just saw this gap. And I thought… I’m sure that wasn’t there like the other day

Yeah hmm.

So I rang the cleft nurse and I said to her like, [son’s name] has got this gap And she was really good, she made an appointment to see me sort of as soon as possible really: I think she came within the next few days. She had a look in his mouth and she said, Yeah, I think it’s split, but let me make you an appointment with the surgeon to double-check And that was quite quick as well: I think that was in… within the next few weeks.

Yeah.

We went to my local hospital, we saw the surgeon, he looked in my little boy’s mouth and he said, Yeah it’s split. Were going to have to do another operation Even though I knew it had split… it was still a shock, and I remember [laughs] crying.

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Safiya was anxious that her son would not be able to eat and drink following his palate closure because he had difficulty following his lip repair. However, he was able to straight away.

Age at interview 21

Gender Female

I expected the worst for his palate operation, and it was actually a better experience than his lip operation. He started eating, I think, the day after he had his operation with his palate.

And I just… I knew how to deal with it a lot better because I’d been through it before, I knew the hospital… I knew the surgeon… I felt a lot more comfortable and a lot more able to deal with it.

So was it the same surgeon?

The same surgeon, yeah, all three times hes had his operations hes had the same surgeon.

I sort of, I knew what he was going to be like when he… came round. And I knew, like I remember in his first operation saying, What if he don’t eat again? What if he don’t drink again? [laughs] and [laughs] the nurse said to me like, Hes learnt to eat and drink with this gap in his lip, so hes obviously going to learn how to eat and drink when hes got this full lip that we have: like we can do it so theres no reason why he can’t do it.

Yeah.

…So obviously [laughs] with the second operation I just had it in my head, I know, no matter how long it takes, hes going to eat again and hes going to drink again. So I weren’t so [laughs] panicky.

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Safiya felt she was able to ask questions of the surgeon and team treating her son and that this became easier as they went through the treatment process.

Age at interview 21

Gender Female

And do you feel you’re able to ask questions of the surgeon?

Yeah I feel like

And the team?

Yeah they’re a really good team and… it’s a really good surgeon that he has. I see them, now I’m going to see them once a year, now that he has finished his operations.

Yeah.

But I used to see them every… probably about every… five, four months at my local hospital: they’d come down and make an appointment for [son’s name] to go there.

Oh you don’t have to go to [specialist hospital]?

No.

OK, every time?

No, not every time: they come to my local hospital.

Oh OK, that’s useful.

Yeah.

Oh OK, I was going to ask you about that, how you managed with keeping appointments.

Yeah, no, I do drive though so
You do, yeah?

eah, I’m able to get to [place name] anyway.

Yeah.

…But yeah they’re… I felt like I was able to ask any question and… I felt like I was able to ask a lot more questions this time because I knew… I was a lot more prepared, so I knew what kinds of questions to ask… rather… than just…

So the first time around you didn’t really know?

Yeah.

And the second time around you kind of had that knowledge, and you knew how to ask questions?

Yeah, yeah.

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Safiya, a single parent, had told her friends that her baby would be born with a cleft before telling her parents. Safiya’s friends helped her to find information about cleft and understand the condition.

Age at interview 21

Gender Female

And were you able to talk about this with any friends and family at the time?

Obviously I told my mum and my step-dad. But… they didn’t really know anything about it either.

They were kind of doing the same as me, like researching on the internet….And I think I actually only told two of my friends at first.

Hmm and what was their reaction?

They were really supportive. They were saying, Safiya, of course you can do this.

Yeah.

They were saying, That’s your child. Like they were just being really supportive. And they were helping me find out information as well. And they were telling me stuff that they’d researched, and come back to me saying, Look, it’s not all this bad. This happens and this happens, but it’s different for every child. So I think it’s… it’s hard to rely on information that you find just searching on Google or something.

What is it about Google which is difficult? What’s the most difficult part of it?

I think theres just so much. Like theres not one thing that you can go to….I suppose you can… oh I don’t know how to explain….Theres not like one thing you can go to where you can find out kind of everything. Google is just all little parts and all little bits and… loads of different stories. So you’ll read one that’s… kind of good, and then you’ll read one that’s kind of really bad, and you just think, Wow… I don’t know, it’s just confusing.

OK sure, thanks. And was this material coming from all over the world?

Yeah, and obviously places not in England it’s probably a lot worse as well, so that was kind of making me feel like, Oh my gosh [laughs].

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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.

Age at interview 21

Gender Female

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 saidactually 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… hes half white, hes 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
nd 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.

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

Age at interview 21

Gender Female

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.

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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.

Age at interview 21

Gender Female

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 hes 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 hed 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.

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