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Interview 05

Brief Outline: The couple discovered in pregnancy they were both sickle cell carriers. She felt strongly as a Christian that she did not want any diagnostic tests, and has faith her baby will be healthy.
Background: Former safety engineer, married, first pregnancy. Ethnic background/nationality' Black African.

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This mother was screened during pregnancy and learnt she was a sickle cell carrier. As a child in Nigeria she had been told she might be a carrier but the diagnosis seemed uncertain. The family assumed she was not a carrier, particularly as she had frequent bouts of malaria in childhood. Their understanding was that carriers had increased resistance against malaria.

Her husband also went for screening during pregnancy and found he was also a carrier. He went to counselling to find out about the implications, but she decided not to go. As a Christian she knew she did not want any diagnostic testing. Although she respects medical science, she believes firmly that with prayer and faith her baby will be born healthy. 

 

She was shocked when she got a phone call to tell her she was a sickle cell carrier. She found it...

She was shocked when she got a phone call to tell her she was a sickle cell carrier. She found it...

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And a week had passed, two weeks passed, and I got a phone call. Some woman, and she was like, 'You've got sickle cell' - oh no - 'You're a sickle cell carrier.' I was like [showing surprise]. She didn't explain it, as in - maybe because I didn't listen to her well. The only thing that entered was 'sickle cell carrier', [laugh].

I was like, 'My goodness.' I just dropped the phone. I started crying. And my husband had gone out, so I called my mum back home in Africa. 'She said I was a sickle cell carrier.' My mum was like, 'You're not a sickle cell carrier. There's no sickle cell in the family.' I was like, 'No she said I was a sickle cell carrier.' My mum was like, 'Does that mean you're AS [sickle cell carrier]?' I said, 'She didn't say anything about AS, AA [not a carrier]. She just said I was a sickle cell carrier.' No, sorry, no - yeah, that's what she said. Then my mum said, 'OK, take it easy.' I'd stopped crying on the phone. Then she dropped the phone. 

Then the lady calls, calls me back and she says, no, what she meant that I had the trait, the trait of sickle cell, to carry a sickle cell baby, that she had to test my husband. So I was like, 'Oh.' So then I sent a text to my husband that like, 'Look, there's a problem, you have to come home.' And he got home I think about 30 minutes after. And I was like, 'This is what they said. You have to go in.' I said, 'Do you know your blood group?' And he was like, 'No.' I was like, 'You've never checked your blood group?' He was like, 'No.' He went the next day and [laugh] he came back looking gloomy. 'What's the problem?' He said they'd said he had the trait to carry, you know? So we're like, 'OK, we're both AS, AS.'

At that point I thought it was the natural thing to - 'AS, AS', at least there was no 'Sickle, SS [sickle cell anaemia], SS'. But she called me again, and she was like we had to come for meetings. We have to come to, for talks or something. She had to explain it well. I said, 'OK, no problem.' Later on I called her and I said, 'I'm not coming,' that I was fine with myself, my faith will carry me. Well, my husband said, OK, he will go. And he went and she explained. I think she explained it what AS and AS, all this stuff, how you get the sickle cell and everything, how it's one in four chances or something.That's how I heard we had sickle cell trait - or that's what they said.

Footnote' 'SS' means sickle cell anaemia, in which the child has inherited haemoglobin S from both parents. People often need help in understanding the difference between being a carrier, which is not an illness and does not affect your health, and having the condition. 

Blood group is a different issue unconnected with carrier status. Being a carrier is about the type of haemoglobin found within the red blood cells of certain people. Blood group is about tiny markers on the surface of everyone's red blood cells, called antigens. These antigens belong to one of four main blood groups (A, B, O or AB). Everyone has a blood group. If someone is given a blood transfusion, it must be from a compatible blood group. 

 

She would still have married her husband even if they'd discovered they were both carriers before...

She would still have married her husband even if they'd discovered they were both carriers before...

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[Laugh] I would have still married him because everybody has their soul mate, you know? I'd have still married him. Maybe that's why we never checked. When you're, when you're made for somebody, you're perfect together, you forget the rest, the risk involved and all kinds of stuff. So I would have still married him. I married him against all odds, with even our different ethnic background - because in my country I'm Hausa, he's Yoruba. We don't really intermarry. My parents, my father didn't accept it at first, but I still went ahead to marry him. No, I'd have married him. It didn't matter. I don't think we'd have checked, but if we had checked I'd have still married him.

 

She felt strongly as a Christian that she did not want any diagnostic tests, and has faith her...

She felt strongly as a Christian that she did not want any diagnostic tests, and has faith her...

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You didn't go to see the counsellor at all then?

No.

So it's just your husband went?

Yes, he went just once. 

And how did he feed back what he'd heard?

[Laughs] He brought some drawings and some, some lines. He wanted to show it to me. I was like, no need. There's no need, because [pause] when I see that, that means I'm accepting that's what - I respect their views, yes, that medical science has said, 'Oh yes you have a, you're a sickle cell trait carrier.' Yeah, I respect medical science, but God every time has, has shocked medical science, you know? So I'm not ready to now look at the paper and say, 'Oh, OK, this is how it happened.' Uh-uh. It didn't happen like that. God gave me the baby, and God is going to help me deliver the baby, and the baby's going to come out well. You know, I feel it every day, you know? And I know before I started, before I got pregnant, I know - you know when you're praying for your baby? 

You know the kind of baby you want. The bible says whatever you ask He gives. And I believe that strongly, because by faith so many things have happened to me. By faith I came to this country to do my masters. By faith I got the visa. By faith I got my job. By faith I got my papers to stay here. By faith I got this council flat, because of the baby. By faith so many things, you know? And I just know it, the baby's blessed, because the baby's opened so many doors for us. So it's, I think basically it's just faith. Faith in knowing who I'm carrying, and who I'm serving, so.

So did you kind of even begin to look at the drawings and think, you know the'

No 

..the one in four this and the?

I never looked at it. I just knew I just saw some lines [laugh]. I never looked at what, I just saw lines. It was like, 'Oh. Just keep it there.'

What about your husband? How did he feel about it?

Just at first, the first day when he went for the, I think he went for a consultation, and they talked to him and everything. But when he came home all I had to do, when he wanted to talk, I was like, 'No. We know the God we serve.' You know, the bible says a woman's faith carries her husband, because if you have a good wife you'll be blessed, as in financially and everything. So it's always the woman that has to be the stronger one, faith-wise. So I'm like, 'Look, this is what it is. This is the God we serve. We should remember where we're coming from.' And he was like, 'You're right, you know.' And that's how we dismissed it. And we've never spoken about it till today.

[Laugh] So it sort of maybe crossed his mind to have testing, you think?

No. Since that first - the first time, yes. Everybody's human. The first time he was like, 'Should we?' I'm like, 'No.' It never crossed my mind, never, ever, ever, ever.

So you didn't get as far as thinking about the risks of the, you know, because it could cause a miscarriage if you had those tests?

I didn't even think about. I didn't even read their booklet [laugh]. It was when I was packing my stuff, I was arranging the stuff on the table and I saw the booklet. I was like, 'Oh my goodness. That was bad of me, I never read it.' I threw it away two days ago or something. I never read their booklet.

 

She would not want to know in pregnancy if her baby had a sickle cell disorder, because it would...

She would not want to know in pregnancy if her baby had a sickle cell disorder, because it would...

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Then another thing is even if you do the screening and you see you have a sickle cell baby you're now in a very difficult position. What are you going to do? You start to think, 'Should I? Should I?' I think they - I don't know whether they call it abort or D&C. 'Should I do that to the baby? Or should I have the baby?' You're not even happy in the later part of your pregnancy. So you're not happy and you're carrying the baby. 

Then you have the baby. Then the stress comes. You've had the stress throughout the later part of your pregnancy, then the stress continues. No, no, I'd prefer you not to go. If you want to, the choice is yours, but the screening I think is really uncalled for, because they put you in a very tight position. Just believe that your baby is sound. That's it. But if you have a sickle cell baby the bible says God won't give you a burden you can't carry. He always gives you something you can carry. If you have a sickle cell baby by chance, let it be at the end - see the baby at the, when you've given birth, at delivery point. Do not check before then. But it's still your choice [laughs]. It's still your choice.

 

Professional learning: She was willing to go along with whatever tests the NHS offered, but she...

Professional learning: She was willing to go along with whatever tests the NHS offered, but she...

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They didn't really tell me much. They just told me they were going to check for glucose levels, blood group, AIDS test, so it wasn't really like 'Glucose level' this is what it means', you know. It was just first lines, and 'We're checking for stuff', and that was it. She said, 'Oh, two weeks time you get your result. If there's anything's wrong we'll call you.' So that's it. So to them there was something wrong, that's why they called me.

And looking back would you make the same decision again, or would you actually say, 'No, I don't want-'?

[Laughs] if I knew they were going to do blood group and all that. But anyway it is, it is the policy. You know, the bible, the bible says give Caesar what belongs to Caesar. So I'll give Tony Blair what belongs to Tony Blair. So if, if the NHS says they're going to check for blood group, AIDS test, who am I to say, 'No'? I will go and do all their stuff. I'll make them happy, respect their views, you know? I'm not going to say, 'Oh, NHS is wrong.' Uh-uh. I respect their views, you know? If God thought there was, he was just going to be healing us without doctors, he wouldn't have made doctors. So I really, really respect their views. I respect everything they tell me. That's why I go for their blood group, I go for their scanning, I go for all the stuff they want me to do. So I would have gone. Because that - it was mandatory, and I'd have gone. 

Footnote' no-one has to have screening if they do not want to - it is a choice. Blood group is different from being a carrier or having the disorder.
 
 

Professional learning: When she was a child her family thought she had only a tiny amount of...

Professional learning: When she was a child her family thought she had only a tiny amount of...

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We had to do like eight blood tests, and they took out eight, my goodness, bottles of blood from me. And they were like, oh, they were going to test for AIDS, they were going to test for blood group, they're going to test for so many stuff. I was like, 'OK, no problem.' I actually thought I was AA [not a carrier], because when I was little, my mum told me, they said the S was so small it was going to leave. And I always used to have malaria. So actually I was so confident that it was AA, you know, so I was like they could take as much blood as they want, you know? 

But you said they'd said there was a tiny bit of S?

Very tiny S. Because in Africa they believe if you're AA you always have malaria, but if you have AS you're stronger. You never fall sick. So when the S [haemoglobin S] - according to the doctor in Africa the S will go. And I always had the, I always had the tendency that I always had malaria. October was my worst month in Africa. I always had malaria. So my mum was like, 'Oh yes, the S had gone'. It was now AA. That's the problem. But it wasn't a problem. Well, that's what I thought.

So has anybody talked to you about that since and, and about why, you know whether that was true, or whether it was the testing hadn't picked it up properly or?

Nobody has, but to me, I know back then, twenty-six years ago, we didn't really have like equipment you guys have now, you know? So I know being Africa, they could have made their mistake, you know? We just take it that, 'Oh yes, Africa wasn't really developed then, so they must have made a mistake.'

Footnote' Although being a carrier of sickle cell does seem to be protective against severe malarial infection in many people, particularly during childhood, there is still a risk of malaria infection. Your carrier status does not change during your lifetime.
 

Professional learning: Rather than getting results in a letter or a phone call, she would have...

Professional learning: Rather than getting results in a letter or a phone call, she would have...

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I think the first thing they did wrong, there was - not that they did it wrong, but I think the way it came out or the way it comes out to, to normal people like us, 'You're a sickle cell trait carrier.' I think this sounds so wrong - to me. I think there's a, there's a nicer way to put it to people. Because my mind had gone, 'Oh, I had SS', you know as in - I think there's a better way to put it to people. Don't emphasise that you're a sickle - just say you have a tendency, you know, don't - because she actually emphasised it that I was a sickle cell trait carrier. But I'm like, 'No, I'm not a sickle cell trait carrier. I'm a child of God, for Christ's sake. I carry a healthy baby.' 

So I think they should try, they should look for milder words to use. Don't, don't put your - yeah, they're entitled to their views. As I said, I respect their views. But don't, don't put it on us, as in then, 'Oh, this is what's going to happen.' No, it's not going to happen. Nobody knows tomorrow. The bible would say you shouldn't be anxious about tomorrow, because tomorrow will take care of itself. So that means God is going to take care of tomorrow. So God knows that he didn't make anybody to be sickle cell trait carriers. So I don't, I don't think they should put it on us. Look for softer ways, gentle words to use, you know? And don't make it, 'Oh, you have to come and do the screening. You have to come and do this.' No, you don't. I think they should just look for, you know, better approaches, you know? The way - I don't know. I thought I got my own harsh, you know. But anyway. Whatever.

What would, would you have maybe preferred a phone call rather than a letter or what, what would have been a better way to?

I think the letter is the worst one. You just open the letter, and you're like, 'You're a sickle cell trait carrier.' I think a phone call would've been better, not even to tell you on the phone. 'Why don't you come down to my office at two o'clock?' you know? And I get there and she's like, 'You have a tendency. This is it.' And she explains it. I'm like, 'Oh, OK.' And I'm like, 'OK, OK, that's what you think.' But I'm not going to tell you, 'That's what you think.' I'm just, 'OK, I respect that' and I leave, and I go back to pray. But not the letter, 'You're sickle cell trait carrier.' I'm like - or the phone call, 'You're sickle cell trait.' I'm like uh-uh.

Do you think that if somebody...?

Because it made me cry at first. So I can imagine all the people, how they get the news - of course they'll cry. Of course they'll feel bad, they'll feel sad, you know. It's not easy bringing, bringing a sickly child into the world. It's not, you know. Then because, then you start, you're going to start feeling bad. 'Oh, I gave it to the child.' You know, you start feeling guilty and all that. So I think there should be milder ways. There should, no, there should be softer ways, yes.

Do you think if somebody had rung you up and said you need to come down to my office in a couple of days' time, would you have started feeling anxious anyway though or?

Yes, but not in a bad way. Anything regarding my baby I will, I will go. If you call me, I will go. Because at first when I was in all the scanning I was working, but those few days I wouldn't work. I would go and do my scanning. Anything like now I have antenatal care. I will go. You don't want to miss anything that has to do with your baby. It's like a special bonding. So if she calls me, 'Oh it's regarding the baby - can you come?' Yeah, anxiety's good, but that doesn't mean it's going to be, 'Oh, maybe there's something.' Uh-uh. I've told you I'm a positive perso
 

Professional learning: Her family are not worried that she is a sickle cell carrier, because they...

Professional learning: Her family are not worried that she is a sickle cell carrier, because they...

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Was there anybody in your family who you knew was a carrier or had sickle cell?

Nobody. My brother's AA [not a carrier], I'm AS [sickle cell carrier].

And in your husband's family?

Nobody. Nobody's ever carried - nobody. Nobody. Yes, nobody. They don't have anybody that has sickle cell trait, nobody. It's just me and him.

What happened in both your families when you got this news, because that has implications for them as well I guess?

Well, when I got the news and when she explained what it was, the AS kind, the sickle cell trait and everything, my family is a family based on faith, so it wasn't, to me it wasn't an issue. It wasn't an issue at all, because we know where we're coming from. We know the God we serve. And we know that once you're positive about stuff, the bible says what you ask from God you get. And the bible says you can't ask for - like you can't ask for like bread and he gives you something else. So I know asked for a healthy baby and that's what I'm going to get. So that's what my family believe I'm going to get. In fact that's what they know I'm going to get, because we all pray. We're all praying, they're praying for me and praying for my - in fact, sickle cell trait doesn't even come at the back of my mind. The baby's going to come out as AA. I pray that every day and I believe it. So it's not an issue.

So did any of your family then go and get tested themselves or retested?

Nobody. Nobody. Nobody, because it's all a matter of faith. It's what you believe inside. 
 
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