Safiya
More about me...
Safiya did a Google search and found lots of pictures of cleft babies which she found to be horrible experience and felt unsupported as at that time point 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 she outside 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 met the specialist cleft team before her son was born and they explained to her what the future care of her son would involve.
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.
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.
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.
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.
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 there’s just so much. Like there’s not one thing that you can go to. ...I suppose you can... oh I don’t know how to explain. ...There’s 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].”
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.
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.
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.
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.
Safiya found the process of feeding in public difficult because of the position she had to keep her son in to bottle feed efficiently.
Safiya found the process of feeding in public difficult because of the position she had to keep her son in to bottle feed efficiently.
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.
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.
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.
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 he’s had his operations he’s 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, “He’s learnt to eat and drink with this gap in his lip, so he’s obviously going to learn how to eat and drink when he’s got this full lip that we have: like we can do it so there’s 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, he’s going to eat again and he’s going to drink again.” So I weren’t so [laughs] panicky.