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Interview 04

Age at interview: 35
Brief Outline: Mother knew she was a sickle cell carrier; husband was re-tested when their son was diagnosed with SC disorder, and found he was a haemoglobin C carrier. Child is doing well. Pregnant again at time of interview, no further testing.
Background: Full-time mother (formerly secretary), married to a doctor, one child aged 5, pregnant. Ethnic background/nationality' Nigerian.

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This mother knew before getting married that she was a sickle cell carrier. Her husband had been tested previously and had been told he was not a sickle cell carrier, so they thought if they got married and had children together there would be no problem. 

The couple waited a long time to have their son. Their first pregnancy ended in miscarriage at 5 months, and then their second baby was born prematurely at 28 weeks and died after a few days. The third pregnancy also miscarried at four and a half months. Finally their fourth pregnancy went to term and their son was born. He was born in the UK, and had newborn screening for sickle cell, but before the test results arrived the family had moved back to Nigeria. The test results were forwarded to them by other members of their family still in the UK. 

They were shocked to discover that the baby had a sickle cell disorder called haemoglobin SC. The husband was re-tested and found he was also a carrier of haemoglobin C. Haemoglobin SC disorder is usually less severe than sickle cell anaemia, and their son has been doing very well with few health problems, apart from sometimes getting a very high fever.   

In their next pregnancy they decided they would not have any diagnostic testing to see if this baby also had haemoglobin SC disorder. The results would make no difference to them because they had already decided they wanted to continue the pregnancy. Having had several miscarriages already, they did not want to have the extra small risk of miscarriage from having a CVS or amniocentesis. They draw strength from their Christian faith.

 

She had known from childhood she was a sickle cell carrier. Others in her family were carriers...

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She had known from childhood she was a sickle cell carrier. Others in her family were carriers...

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You must have been tested at some point, to know you were AS. Is that something in the family? Is that why you were tested?

Well, I think everybody needs to be tested at some stage, you know, because especially when you hear so much about SS children [children with sickle cell anaemia] being sick and all that, so you want to know what you are, so that when you do want to get married, you don't marry somebody that's going to give you that risk factor of you having SS children. So I think, you know, everybody just gets tested for one reason or the other. Maybe because you want to get married, or you have a boyfriend, or you just want to know. So I think that's how we just - we just knew - I just knew I was AS [sickle cell carrier]. I can't remember how I got to find out, but I just know that I'm AS, maybe from being in hospital or something.

And is there any sickle cell in the rest of your family?

Well, there's people with AS, but no SS or anything like that.

No-one's actually got the condition?

No, no.

 

Her husband had been tested in Nigeria and told he was not a sickle cell carrier. It was only...

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Her husband had been tested in Nigeria and told he was not a sickle cell carrier. It was only...

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Well, obviously being married to a doctor, he's going to be concerned about what my genotype is and all that, and since that's the trend nowadays anyway, to find out what's what before you actually get into the marriage. So he told me he was AA [not a carrier], and I knew, 'Oh, fine, once you're AA, anybody else can be anything else, it doesn't really matter.' So then I was AS [carrier of sickle cell], so we just thought, 'Well, that's fine then, you know.' 

Then we got married, had a baby, and went back to Nigeria. And then a letter was sent to my sisters in London. So they phoned us and told us that my son is actually SC, so that was like, 'What? How? How can he be, you know?' And we were so confused and everything, and my husband had to do the test again. And when he did do it again he actually found out that he was AC [carrier of haemoglobin C]. So here he was actually living with it that he was AA, and then all of a sudden somebody's telling him that he's AC, you know. And we were very upset about it. And it was quite emotional as well, that time, because after trying so long to have a baby, and then all of a sudden you're told that your baby's SC [has haemoglobin SC disorder], you know. But I think being a doctor, I think it was worse for him because he knew so much about it, you know. He could really understand what could happen with the child'.

And he'd been tested in Nigeria?

And it came out AA. And apparently it's to do with the way they test it. They don't test it fully or something? Some medical thing. Sometimes some people don't do the right testing, so you get AA. And because it's not so common, AC, so people might not really maybe understand it when they see it - they just think, "Oh, this one's AA." 'Because he probably was tested years ago, and never had any reason to do any test again, you know, for him to know that he's not AA. So he's always believed that he's AA.

Footnote' Haemoglobin SC disorder is a type of sickle cell disorder in which the child has inherited hameoglobin S (sickle cell) from one parent and haemoglobin C from the other. Whilst it is a type of sickle cell disorder, it is a distinct condition. The symptoms can be similar to sickle cell anaemia, but SC disorder is often (but not always) milder in its effects than sickle cell anaemia.

The word 'trait' is sometimes used to describe carrier status. It is possible to screen only for sickle cell. This test would not show any other haemoglobin variants. Her partner was correctly informed that he did not carry sickle cell, but he was not made aware that there are additional tests available to test for other variants.
 
 

When her husband's family discovered he carried haemoglobin C and the baby had SC disorder they...

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When her husband's family discovered he carried haemoglobin C and the baby had SC disorder they...

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I mean, family, when they got to know, they were probably more scared, because they didn't really know anything about it. They thought it was completely - they thought it was SS [sickle cell anaemia]. So you had to explain that it's a mild form of SS, you know. But even saying that, they were still scared, yeah.

After that I think that was when his family, they all had tests done. Since he was AC [carrier of haemoglobin C], there are bound to be a few ACs in the family. Because in my family, already, we know we have the S trait, so they had been doing tests before, anyway.

So for your family it wasn't a particular shock?

Yeah, but I think then it made them more aware of it, that they have to really put it into consideration.

And know what their potential partner is carrying?

Exactly, exactly.

And did any of your husband's family discover that they were carriers?

I think his sister. I think she's AC. Yeah, I'm not sure whether they've all done it by now. You know, I mean there was a time we were even teasing the parents that, you know, "One of you is C, I'm sure one of you is C", you know, teasing them. But obviously because they're old, you know, they're not really bothered about testing, so it's just for the kids to go and test.

Footnote' 'SS' means someone who has inherited haemoglobin S from both parents and therefore has sickle cell anaemia. Haemoglobin SC disorder is a type of sickle cell disorder in which the child has inherited hameoglobin S (sickle cell) from one parent and haemoglobin C from the other. Whilst it is a type of sickle cell disorder, it is a distinct condition. The symptoms can be similar to sickle cell anaemia, but SC disorder is often (but not always) milder in its effects than sickle cell anaemia. 

 

Her husband said if he'd known they were both carriers, they probably wouldn't have got married....

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Her husband said if he'd known they were both carriers, they probably wouldn't have got married....

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I think I did ask him that, you know, 'What would have happened if you had found out that you were AC [carrier of haemoglobin C] and I was AS [carrier of sickle cell]?' Then he said, 'We probably wouldn't have gotten together.' Yeah, because you know, he's a doctor. He knows all the things that could go wrong with a child, so he probably wouldn't think about it. So that's why sometimes I think it's just God that wanted us to be together, you know. And in the Bible it says that he wouldn't give you any situation that you cannot handle. And he gave us this situation and we were able to handle it, even though, yes, it was emotional, it was stressful, it was scary, but we handled it.

So are you quite glad, in a way, that you didn't know before?

Oh yeah, definitely, definitely, because, wow, I just can't imagine.

No, it's such a sort of watershed moment, isn't it? That you could have gone in a completely different direction.

Different direction, exactly. That's why I just think it's, it's God just wanted us to be together.

Footnote' Each child born to this couple has a 1 in 4 risk of having a sickle cell disorder called haemoglobin SC disorder, in which the child has inherited haemoglobin S from one parent and haemoglobin C from the other.

 

Now she has a son with SC disorder, she decided to have no tests in her current pregnancy because...

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Now she has a son with SC disorder, she decided to have no tests in her current pregnancy because...

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And this time around how have you felt, approaching the pregnancy, and thinking about testing? Did you think about whether you'd have the baby tested?

No, because there really wouldn't be any point. Because it's either you say you want a child, or you don't want a child because it could be SC [have haemoglobin SC disorder] or whatever. And I think because we've gone through this experience with my son, and I know it's not such a bad, it's not that bad, so, you know, I just pray for the best really.

Did you have counselling fairly early on in the pregnancy?

Well they, they did send me letters whether I wanted to come and talk about it and everything and I just said no, because I think I have enough experience of it already. I didn't really need any kind of counselling, because even if - I'm not praying for it but even if this child is SC I wouldn't say, "Oh no, I'm not having that baby". So there's no point in even doing any kind of tests or anything, so I'm just happy with what God's going to give me.

Footnote' Haemoglobin SC disorder is a type of sickle cell disorder in which the child has inherited hameoglobin S (sickle cell) from one parent and haemoglobin C from the other. Whilst it is a type of sickle cell disorder, it is a distinct condition. The symptoms can be similar to sickle cell anaemia, but SC disorder is often (but not always) milder in its effects than sickle cell anaemia. 

 

It was a shock to discover the baby had SC disorder when they thought they were not at risk, but...

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It was a shock to discover the baby had SC disorder when they thought they were not at risk, but...

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Then we got married, had a baby, and went back to Nigeria. And then a letter was sent to my sisters in London. So they phoned us and told us that my son is actually SC [has haemoglobin SC disorder], so that was like, 'What? How? How can, how can he be, you know?' And we were so confused and everything, and my husband had to do the test again. And when he did do it again he actually found out that he was AC [carrier of haemoglobin C]. So here he was actually living with it that he was AA [not a carrier], and then all of a sudden somebody's telling him that he's AC, you know. And we were very upset about it. 

And it was quite emotional as well, that time, because after trying so long to have a baby, and then all of a sudden you're told that your baby's SC, you know. But I think being a doctor, I think it was worse for him because he knew so much about it, you know. He could really understand what could happen with the child. And I think because of that, I think I took it badly as well, but then after some time we just calmed down about it. What's done is done, you know, so you just have to move on and live with it.

Footnote' Haemoglobin SC disorder is a type of sickle cell disorder in which the child has inherited hameoglobin S (sickle cell) from one parent and haemoglobin C from the other. Whilst it is a type of sickle cell disorder, it is a distinct condition. The symptoms can be similar to sickle cell anaemia, but SC disorder is often (but not always) milder in its effects than sickle cell anaemia. 

 

In Nigeria her son with SC disorder was very ill with malaria. Since they have been in London, he...

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In Nigeria her son with SC disorder was very ill with malaria. Since they have been in London, he...

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As time went on, obviously when I looked at my baby I just looked - he looked healthy to me, there was nothing wrong with him or anything. But then after some time, I think, being in Nigeria, malaria's the worst that hits the child, and with someone that has SC [haemoglobin SC disorder], I think it's even worse. His temperature's always going high. Over the years he did have high temperature. He was always admitted to hospital and, you know, really losing weight and either having serious diarrhoea because of all the medications he's taking. So it was quite an emotional time, every time we were admitted into hospital. You know, that happened like three or four times.

And then I think as he got a bit older, maybe one or two years old, he would get the malaria with the high fever again and, you know, the most important thing is just try and control that fever, you know. I mean, it could get as high as I think 40 or something, or 39? Really high, and you know, it was quite scary, because sometimes, there was a time he was even shaking with it. You know, that was quite frightening, but, as a Christian, we put everything in God's hands, and that really helped me, you know. It really helped us and everything, and we just left it, put everything in God's hands, and did what we had to do for him to care for him. And that was that, really, you know. 

I mean, everybody, every time he's sick everybody's panicking and, you know, running around, and families, the two families would come and visit us in hospital. You know, it was quite stressful but, you know, we got through it. And then we moved over to London, you know. And then he's now five, and since we've been here there's been nothing. He's not been sick or anything, in any form, nothing - just colds and, you know, the basic things you get when you're in a different climate.

Footnote' Haemoglobin SC disorder is a type of sickle cell disorder in which the child has inherited hameoglobin S (sickle cell) from one parent and haemoglobin C from the other. Whilst it is a type of sickle cell disorder, it is a distinct condition. The symptoms can be similar to sickle cell anaemia, but SC disorder is often (but not always) milder in its effects than sickle cell anaemia. 

 

Professional learning: She remembers the midwife taking some blood samples from the baby, but she...

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Professional learning: She remembers the midwife taking some blood samples from the baby, but she...

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And did you know that he was being tested for sickle cell?

Well, I don't think as such I did, but I do remember the midwife came, took some samples of blood tests, you know. Whether she mentioned it or not I can't remember, but I know she did do some tests. You know, and she said that we would get the result after some time. And I think we were leaving for Nigeria anyway, so we wouldn't have gotten the results. So I got, the results came here. That was when they now phoned us in Nigeria. So I wasn't sure what kind of test they were doing, but I just knew that, well, they have to do it, so.
 
 

Professional learning' As a Christian, she believes that God will not send you a situation you...

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Professional learning' As a Christian, she believes that God will not send you a situation you...

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Well, if we're talking in terms of maybe medically now, you should, I think everybody should get tested, so you know what your husband is and what you are. Then you can decide for yourself what you're going to do, whether you are going to go ahead and get married to that person or not. And - but then saying that, as a Christian, which I know a lot of black people are - as a Christian you always put everything in God's hands. So if you have enough faith you can go ahead and do whatever you want, because you know God is with you, and he wouldn't put any situation in front of you that you couldn't handle. Of course it might not be easy to handle it, but you will be able to handle it, you know. True, it might not be easy, but he'll give you something that you'll be able to cope with, deal with, at the end of the day. So that's what I would say.
 
 

Professional learning' In her current pregnancy, it was nice that the sickle cell counsellor...

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Professional learning' In her current pregnancy, it was nice that the sickle cell counsellor...

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I just felt, 'Oh, it's actually nice of them to have remembered that okay, yes, this lady's pregnant.' Because I think it was passed on from my clinic or something that, OK, I was pregnant, and obviously they knew I have a child who's SC [has haemoglobin SC disorder] and I'm AS [a sickle cell carrier]. So I just thought, 'Well, it's good to know that, you know, somebody cares out there." I think that was, I think that was nice, just to have that. Obviously I didn't think about it when I was pregnant that, "Oh, I'm going to need some sort of help." Because I knew that, 'OK, yes, I know what I have to go through', you know. But it was just nice to have that letter sent to me, so you know that somebody actually is concerned, and there to help you if you need it, so it was nice. It was nice.
 
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