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Interview 11

Age at interview: 30
Brief Outline: Mother knew she was a sickle cell carrier; partner had screening late in pregnancy. She was shocked when the baby was born with sickle cell anaemia. Although the baby is well, she was so afraid of having another affected baby she ended her next pregnancy.
Background: Chef, single, one child aged 2. Ethnic background/nationality' Black African.

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This mother had screening when she came to the UK from Africa, and another test in pregnancy confirmed she was a sickle cell carrier. She tried hard to persuade her partner to go for screening, but he was reluctant. Eventually he had a test very late in pregnancy but his results came back after the baby's birth. At the same time, the baby's newborn screening results showed she had sickle cell anaemia. The parents were shocked. The mother felt ashamed and guilty, and couldn't tell anyone what had happened at first. Even though her daughter has been generally well so far, she feels very protective and worried about her future, and she is afraid of having another baby with the condition. When she became pregnant again unexpectedly she decided to have an abortion because she was so anxious. This was a very painful decision for her. 

She is very well supported by her local sickle cell counsellors, and has had good information. She feels more should be done to inform employers and people working in schools, nurseries and local authorities about the needs of children with sickle cell anaemia and their parents. Although at first she did not tell anyone about her daughter's condition, now she spends a lot of time spreading information and raising awareness.

She believes it is really important for people to be screened, preferably before they start a relationship with someone, but also in pregnancy. She feels it is better to have as much information as possible in pregnancy, rather than to discover the baby is affected after birth as she did. 

 

Her partner was reluctant to be screened during pregnancy. He could not believe there could be...

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And you said you, you kind of got into blaming each other a bit?

Yeah. Yeah, saying that, he used to say, 'Oh' - because before he did the test I had to like, I had to talk to him like over like three months, four months to get him to do the blood test. Because what they said to me was like, 'Tell him to do the blood test there [abroad], and then he'll just post the result, the blood test result or whatever.' I tried, I tried to talk to him. He couldn't do it. He would keep saying, 'Oh, there's nothing wrong with me, there's nothing wrong with me. I don't want to do anything. There's nothing wrong with me.' I was like, 'Just do the blood test and bring the result.' 

So what happened was he came, because I was having like problem with, I was having like excess fluid in my, during my pregnancy. So I used to have like test, a scan every three weeks or two weeks, like go in for a scan. So the last one [laughs], the last time he came with me, that was like the last scan I had in August. And the midwife was like, 'Where is your partner? We're still waiting for this blood test from him.' And he, and I just said to the woman, I said, 'That's him standing there.' 

The woman just drag him up there and get him to do the blood test [laughs]. And we went in to do the blood test. But by the time we left there, we started fighting before we left the hospital. Because he was like, 'Why are you forcing me to do it? I don't want...' It takes me quite a lot of time to get him to do it because he was thinking there's nothing wrong with him. And I had to tell him, I said, 'You don't have to. If you've got sickle cell trait, you're not, you won't even know that you've got sickle cell trait. You have to do the blood test.' 

I told him, I said, 'I didn't even know. I only found out after. It was like I knew earlier about it because they told me that it's not something that you would be sick of.' I didn't take it so seriously. I didn't even, it's only when I had my child that I was like thinking, 'Okay, I didn't know I had something that's like so, that another person can get or whatever through that.' And he was like, 'I don't want to do a blood test. There's nothing wrong with me. Don't force me to do a blood test.' And he was even like thinking, 'Do you think I've got AIDS or whatever?' I was like, 'Don't, no, it's not that. It's just ...' But it takes me quite a long time to get him to do it. Because I found out very early and he didn't, he didn't want to do it. I think he didn't do it till August. That's why I didn't find out till after she, I had the baby.

Did, did you feel angry with him at the time?

Yeah. There was one point I was like telling him, 'Okay, that's it. If you don't go and do the blood test I don't want to talk to you any more. I don't want anything to do with you any more.' There was one point I had, I actually went through that, like telling him, 'That's it. I don't, if you don't do the blood test, don't bother to call me.' 

Footnote' often people do not realise that being a carrier does not affect your general health and you may have no idea you are a carrier unless you are tested. A woman whose partner does not attend for screening can be offered a diagnostic test in pregnancy (CVS or amniocentesis) if she wishes to know for certain if the baby is affected. 
 

 

Asking a partner if they are a carrier is difficult, but having a baby with sickle cell anaemia...

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Looking back to when you first had the, the blood test, when you came to the UK, do you now feel you should have been told more at that point?

Yeah.

What would you have liked then?

Just maybe, maybe to know like, or if they can tell, or saying to people that, 'Because you've got sickle cell trait you can't go out with somebody - you have to try to find somebody that is not.' But it's a bit difficult for you to start going out with somebody and telling the person to go and get a blood test. That is so difficult. It would be so difficult. So you wouldn't even know anything. And if you find out, it's like after the, for example when I found out, because they found out I had sickle cell trait, like three months you can do the screening and thing, and then you find out that your child might have sickle cell. 

It's like having abortion, that's very very painful. It is very painful. Up till now when I had the abortion, the last one I had when she was one, lately I was thinking, 'Oh, gosh, if I'd had my baby, here she would have been one.' Because, just, just because I was so scared that the child might have sickle cell. 

If I'd known, that's it. If I'd known. Sometimes I just say that to myself because I can't even, because if I keep saying that to him I know we're going to be fighting all the time. So I say that to myself most of the time. 'If I'd known.'

But then as you say it's difficult, because you don't, you can't ask someone on a first date. And then if you've started to get to know each other and like each other, then it's hard to separate?

I've actually known him for a very long time. I've been going out with him since I was like 17 in Sierra Leone. And that, at that time we didn't even have - because the medication back in Africa is not that good. We don't have information about that thing. But he didn't know he had sickle cell trait until after the [pause] the baby. But sometimes I just sit down and think, 'If I'd known.' And even when I had the child, he's actually, he's, he asked me to get married. But sometimes I just think like, 'I'm going to be having a child with sickle cell.' Up till now I can't even give him an answer to say I'll do it or whatever.
 

 

When she became pregnant again she was so worried about having another baby with sickle cell...

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And it was quite difficult, it was so difficult for me to go through. Even up till now, there's some times it's like - because I didn't know - it's like sometimes when, if she's just crying, when she was teething, I might just think, 'Oh, maybe she's having a crisis.' And thinking, I was like, I got so panicked, I couldn't sleep, I was like crying most of the time, 'What have I done to her?'

But the centre was very very helpful. The staff in the sickle cell centre was very very helpful to me. And my family as well were very very helpful, supportive and... 

After she was, I think it was like at the age, before her first birthday I found out I was pregnant again. I had to have an abortion because I felt I couldn't do it any more. My boyfriend was so upset, he was like, 'Why are you doing this?' I was like, 'I can't have another child with sickle cell.' So up till now I'm so scared to have babies. I don't know, I haven't like faced it, even though they say they can do screening and things to do - it's like for you to know beforehand or whatever if you want to go on with the pregnancy. I'm still a bit worried that--

So with that pregnancy you, you didn't have diagnosis to find out?

No. I didn't even wait. I think I was like three, when I found out it was like about two months, coming to three months, I just like took it out. He didn't even know. I even went behind his back to do it. He was so upset when he found out that I had an abortion. Because I couldn't, I told him later, I said, 'I don't want to have another child, because I know what I went through with what I had for my daughter. I don't want to go through it again, please.' So my friends - my cousin was like, she was very supportive and she went, 'It's up to you. Whatever you want to do you can go and do it.' So that's what I did. I just had the abortion. 
 

 

The newborn results showing the baby had sickle cell anaemia arrived at the same time as her...

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The newborn results showing the baby had sickle cell anaemia arrived at the same time as her...

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I found that I was, I did find out I was sickle cell, I got sickle cell trait. And when I got pregnant I knew I was sickle cell trait, but I never knew my partner was sickle cell trait as well. So I went to the hospital, because he's not staying with me. I went to the hospital, I had the blood test done. I'd like go to my antenatal classes and everything. And later, it was like later about like six months or so [into the pregnancy], and they said, 'He needs to do a blood test.' And I told them, 'He's not here.' And they went - I told them he lives in Amsterdam - and they went, 'Oh, he can do his blood test there.' Well, when I was telling my partner that he has to do a blood test because they found out I had sickle cell trait, he was like, 'Oh, there's nothing wrong with me. I'm fine. I'm okay.' And I was like, 'Okay.' So I didn't bother with him, I left him. 

And then he came some time in July, August, like a month before I had the baby. He came in August and he did the blood test. Well, by the time that the result came back I'd had the baby already. So I didn't, I didn't know. It was like then they found out that she had sickle cell. Then the sickle cell centre had to send somebody in to come and do counselling. And he was there with me when they came in to tell us that she had sickle cell. I took it very very bad, because it was like both of us nearly split up, we were like fighting, arguing most of the time. He was like saying that it was me that had the problem. I was like, 'It was you.' Then we had like, we went through like lots of problem with that. And I was so ashamed like to tell my friends that she had' that she had sickle cell. 

Footnote' A woman whose partner does not attend for screening can be offered a diagnostic test in pregnancy (CVS or amniocentesis) if she wishes to know for certain if the baby is affected. 
 

 

The sickle cell counsellors gave her good information about the condition and what to expect. She...

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She did actually like just told us, she actually like gave us like knowledge about it, like tells us about the sickle cell, what it's like and what causes it. It's like something that you - it's not like' it's not something that you just get or it's not contagious or whatever, it's just the thing. She explained to us everything. And then she told us that she had, my daughter has got the sickle cell disease, but because she's young she's got the haemoglobin F in her blood. It's like after the age two, that's when they start knowing what type of sickle cell she's got. And she was, she actually informed us very well and she came with - that's when she came with the book and leaflets and things to give us to read about it. And then, because I was home with her I started going to internet caf's like start checking, getting information about it. And then I started going to the parent group, who have like people coming in with sickle cell that talks to us about it.

Footnote' Sickle cell disorders can be diagnosed after birth or usually by 6 months of age when most of the fetal haemoglobin has dispersed. Haemoglobin SC Disorder is evident from birth as the haemoglobins are quite clear despite the presence of fetal haemoglobin. On some occasions for the rarer types of sickle cell disorders diagnosis may be later than 6 months.
 

 

It is important to spread awareness about sickle cell disorders. Her local council did not...

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It is important to spread awareness about sickle cell disorders. Her local council did not...

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I just think they should just give more, more information and support for people with, that have got kids. Because even though sometimes people - for example when I was like trying to get a place, accommodation, I went through [Town] Council, because where I used to live, because I found out she had sickle cell, where I used to live the room was very, very cold. 

So I knew she was not supposed to be like exposed to cold that much. I went through to [Town] Council, and they just wrote back to me saying that it's not something that they recognise. That's what they said to me. And it was like it's something that I think is very, I've done something bad to my child. And somebody is just telling me it's not something that's a priority for you to get a place. And I had to tell them that the place I used to live was very cold and she's got sickle cell. She's not supposed to be cold, cold. 

I just think that people, they just need to like give more information out to people to know what it's like, people with sickle cell what they need to like' what they will go through and things like prevention or whatever they need. Because when I was telling them that she's not supposed to be in a cold room, they were like, 'Oh, it's not something''. The sickle cell centre had to write to them and give them the information. Then when they took the letter to the, I think the medical whatever in the borough, and they said it's not a priority for them to give a place, even though the child has got sickle cell. I was like, 'Okay.' I don't think - they should just try and give support and help to parents.

And you were saying with the, your employer and the nursery, you had to go and find information to give them?

To give them, yeah. They should send it to schools as well, because my nursery is like, I think they, I think they've had, they said they've had a child with sickle cell, but I don't think they've got like more information. I don't know what. But because I, because of, I do go out to get information about my child. I do go out to get information about her. So I tend to pass the information to people a lot. And then I tend to talk to people about it. All the time I do talk to people about sickle cell. 
 

 

She worries all the time about her 2-year-old daughter's health, even though she has not yet had...

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Even up till now it's like whenever she goes to - because she's started going to nursery - it takes me time for me to let her go out to like play with other people, like go to weekends. Because I had to stay with her at home for a year, eight months. I couldn't let her go to nursery because I was thinking, 'Oh, maybe she goes to somebody's house, she might have a crisis. I'm not there.' So I didn't let her go. So she was like stuck with me. As soon as I leave the house, the room, she starts crying. She didn't want to go to anyone. But when she started going to the nursery now at least she's fine. She's never - thank God - she's never had a crisis before. I'm so happy for that now. And she's doing fine, she's doing so fine.
 

 

The mother and baby group at the sickle cell centre helped her learn how to manage the condition....

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The mother and baby group at the sickle cell centre helped her learn how to manage the condition....

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There was, when they told us at home - because they came home to talk to us - when they came to my place to talk to us, it was like then a month later or I think, yeah, the following month - because they have it every first Wednesday, the mother and baby group - I started going in there. They started like showing us videos about it, like other people, like how it affects other families. And I've like got, I've got like lots of videos, because they did, like whenever we go in they will show us, after they will finish talking to us they will show us videos about like what's going on and what it's like to have sickle cell, it's like to have kids with sickle cell. They will have people that are sickle cell suff-, carriers to come in and talk to us at the centre, which I think is good. Like to tell us the experience they've been through as well.

And, and is it helpful having other mothers that you can talk to?

Yeah, yeah.

Do you contact each other outside the group?

Hmm, no [laughs], no. It's just that we don't like call each other or whatever outside the group. But I've been to like, when I go out if I see them we'll sit down and then we'll like chat and talk about, 'Oh, how is the child?' or whatever. It's like we'll sit down and talk about it. But I've never like called anyone outside the group, no.

But within the group do you talk much amongst yourselves? Or is it mainly listening to other people?

We, you, we explain about things. Because for example like when she started taking the medicine, the penicillin and folic acid, because I didn't have - there was one point I was like so worried because she couldn't drink the medicine any more. I was like saying, 'Oh, if she doesn't drink the medicine she might have a crisis.' And then I was like worrying because I think she got fed up with the taste. And surprisingly now she's the one reminding me in the morning to give her the medicine. When I wake up in the morning she comes in and say, 'Mummy, medicine please.' And she goes in the fridge and get the medicine and everything out, yeah. She's the one, even in the morning if I'm rushing to go out to get to work she will run up and tell, 'Mummy, medicine please.' And so I have to give it to her in the morning before going [laughs].

Footnote' taking penicillin regularly helps prevent people with sickle cell disorders from getting infections.
 

 

Professional learning: Her partner did not understand that he could be a carrier and still be...

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And you said you, you kind of got into blaming each other a bit?

Yeah. Yeah, saying that, he used to say, 'Oh' - because before he did the test I had to like, I had to talk to him like over like three months, four months to get him to do the blood test. Because what they said to me was like, 'Tell him to do the blood test there [abroad], and then he'll just post the result, the blood test result or whatever.' I tried to talk to him. He couldn't do it. He would keep saying, 'Oh, there's nothing wrong with me, there's nothing wrong with me. I don't want to do anything. There's nothing wrong with me.' I was like, 'Just do the blood test and bring the result.' 

So what happened was he came, because I was having like problem with, I was having like excess fluid in my, during my pregnancy. So I used to have like test, a scan every three weeks or two weeks, like go in for a scan. So the last one [laughs], the last time he came with me, that was like the last scan I had in August. And the midwife was like, 'Where is your partner? We're still waiting for this blood test from him.' And he, and I just said to the woman, I said, 'That's him standing there.' The woman just drag him up there and get him to do the blood test [laughs]. 

And we went in to do the blood test. But by the time we left there, we started fighting before we left the hospital. Because he was like, 'Why are you forcing me to do it? I don't want...' It takes me quite a lot of time to get him to do it because he was thinking there's nothing wrong with him. And I had to tell him, I said, 'You don't have to. If you've got sickle cell trait, you're not, you won't even know that you've got sickle cell trait. You have to do the blood test.' 

I told him, I said, 'I didn't even know. I only found out after. It was like I knew earlier about it because they told me that it's not something that you would be sick of.' I didn't take it so seriously. I didn't even, it's only when I had my child that I was like thinking, 'Okay, I didn't know I had something that's like so, that another person can get or whatever through that.' And he was like, 'I don't want to do a blood test. There's nothing wrong with me. Don't force me to do a blood test.' And he was even like thinking, 'Do you think I've got AIDS or whatever?' I was like, 'Don't, no, it's not that. It's just...' But it takes me quite a long time to get him to do it. Because I found out very early and he didn't, he didn't want to do it. I think he didn't do it till August. That's why I didn't find out till after she, I had the baby.

Did, did you feel angry with him at the time?

Yeah. There was one point I was like telling him, 'Okay, that's it. If you don't go and do the blood test I don't want to talk to you any more. I don't want anything to do with you any more.' There was one point I had, I actually went through that, like telling him, 'That's it. I don't, if you don't do the blood test, don't bother to call me.' 

Footnote' often people do not realise that being a carrier does not affect your general health and you may have no idea you are a carrier unless you are tested. A woman whose partner does not attend for screening can be offered a diagnostic test in pregnancy (CVS or amniocentesis) if she wishes to know for certain if the baby is affected. 
 

 

Professional learning: It would be better if more health professionals knew about sickle cell...

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I'm not that sad that it's only, it's like it was just a black person that came over to talk to me. It's like having other people knowing about sickle cell I think is a good idea. Because for example like, when, when she had the sickle cell, when I started going to, where I used to live in [town], where I used to live down there, the GPs in the surgery that I was with, it's only one, they had one black doctor there. And surprisingly I went into one - I went in wanting to see somebody because she had, she had like temperature and she was crying all the time. I didn't know what happened to her. I thought that she had sickle cell crisis. I had to run down to the GP with her. 

And the lady was saying, 'Oh, I don't know much about sickle cell.' I was shocked. But the black doctor they had there - so because of what she says, whenever I want to go, take her in, I will ask to see that particular doctor because he's got more information about it, he knows more about sickle cell. Because he usually say to me, 'I know more about it from back home.' Because he's from, yes, because he's from Africa as well. He's like, 'I know more about it from back home.' 

So it's, I think it's, it would be easier if they've got like other people knowing more about sickle cell, if it's not just black people that knows about it, and just Indian. Because the doctor that she had in [hospital], he was Indian doctor that she - I've never met white, I've never actually met a white doctor since I found out she had, that she had sickle cell. All the people that I meet it's like black, Asian, black, Asian, yeah. I think it would be a good idea for other people to get more experience about it. Even though now that she's like - because lately she went, she had to go to be admitted at [hospital] because she had to take, she took the pneumo-vaccine after the age two and she had a reaction, late reaction to it. So she had to be admitted. But the doctor now she's going to be seeing, when she gets back, is a white doctor. And they had like very good information. I was like, I felt so comfortable talking to them because they had like more information about it.

Yes. So it's having the information that counts?

Yeah.
 

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