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Interview 28

Age at interview: 32
Brief Outline: Newborn screening showed the baby was a sickle cell carrier. The mother had been tested years ago and told she wasn't affected, but a new test showed she was a carrier.
Background: Full-time mother, single, with three children (twins aged 6, baby 4 months). Ethnic background/nationality' half white British, half Jamaican.

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Some years ago this mother asked to be tested for sickle cell because she had been feeling unwell, but the results came back to say that she was not affected. When her third baby was born recently, the heel prick test result showed the baby was a sickle cell carrier. This was a shock, and the mother was surprised to find that when she was re-tested she was a carrier after all. 

She is angry that her father knew there was sickle cell in the family but did not think she needed to know. She feels she did need to know, especially as the children's father is black, and she previously had another black partner who knew he was a sickle cell carrier. 

When she first got the letter with the baby's results it was a very worrying time. The letter gave a number to ring for more information, and she felt she was lucky to find someone there when she rang who could answer questions and reassure her. However, it might have been better to have someone to talk to about the results rather than getting them in a letter. The mother is dyslexic and finds reading medical information difficult. When a counsellor came to the house and explained how the gene is inherited using a diagram this was a real help. 

She thinks it is important that there should be greater awareness about sickle cell, and that more people should be tested before they get pregnant, whatever their family origin, so they can take steps to avoid passing the condition on. She will certainly make sure her children are well informed before they start having relationships. 

 

She asked to be tested for sickle cell some years ago. The result came back negative, but she...

She asked to be tested for sickle cell some years ago. The result came back negative, but she...

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The first I knew of it was I received a letter through the post saying that my son was a possible sickle cell carrier and that was like, I was blown away. I couldn't believe it, because I'd had a test done about eight years ago, because I'd had problems with passing out, that I actually thought maybe I'd got sickle cell. So I asked the doctor to do a test. It come back negative. So of course I presumed that there was nothing wrong with me. I have no form of sickle cell, nothing to worry about. So of course when this comes through the door, I was like, 'That can't be right. I know I'm not a carrier. I know the dad isn't a carrier. So where would it have come from?' And it was like, 'I don't know.'

I'd like to have known before, before pregnancy. At the end of the day I had tests years ago which should have, I should have been told there and then, 8 years ago, whether I was a carrier or not, prior to having children, and then I wouldn't have had that risk, or that shock of finding out that my child is a sickle cell carrier. You know what I mean? It's a case of I'd have known that there was a maybe chance before having him, with all three of them. So, you know, it's a case of you find out 8 years later after you've had three children that you're a sickle cell carrier, and you've already purposely asked for the test.

 

When she got her son's newborn screening test results, she rang her father to ask about family...

When she got her son's newborn screening test results, she rang her father to ask about family...

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Well I didn't know my father until I was 13 anyway, so lots of things are coming out in the family that I've not known about, especially having a Jamaican side of the family. There's things you just don't know. And knowing I was mixed race I wanted to make sure that I wasn't. I had sort of asked - because my dad's a really funny person to ask questions, personal questions, anyway, he doesn't like to disclose things. So it was case of, you'd ask and it was sort of brushed under the carpet. It would be a quick answer and then brushed under the carpet. 

So to find out that I was a carrier, and he knew he was and didn't bother to tell me, I was really, really annoyed. Because like I say I could have had a partner that was a sickle cell carrier. Not knowing I was, we could have then had full blown sickle cell babies, and it's a case of then that's, it is frightening, isn't it? I mean, it's frightening knowing that we're only carriers, but not as bad that my children could have been full blown, so.

And he obviously had mentioned at some point to you that there were members of the family that were'?

Well, I asked. When I had the letter back, the first letter saying that my son was a possible carrier, I rang him up and said, 'Dad, look, is there sickle cell in the family?' And he said, 'Yeah, but it's only trait and it's distant, so don't worry about it.' It was a case of 'Don't worry about it, we're only carriers. There's nothing to worry about.' And I was like, 'But I have got to worry about it, because if my son has got it, then he's got to worry for himself and his partner when he's older, for his own children's sake.' Because, just because he might decide to choose a mixed race girlfriend or a full Jamaican girlfriend, or whoever - somebody that could be a carrier of sickle cell, and so he's obviously got be careful. 

And he, my dad, should have told me for me to be extra careful too, because I have had a partner, in the past, that's been a sickle cell carrier. And to think that how close I could have come to having a full blown sickle cell baby, it frightened me. It did frighten me.

Footnote' the word 'trait' has sometimes been used to describe carrier status. Sometimes it becomes confused with the word 'trace', which can give the wrong impression that it is insignificant.
 
 

She plans to explain to her children in their early teens what being a carrier means, so they...

She plans to explain to her children in their early teens what being a carrier means, so they...

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[Sighs] I don't know. I don't what's the right age to tell them, but I think pretty early, because boys and girls will be boys and girls, and they can have children at an early age of 13, 14. So I think, yeah, I will tell my children quite young that, 'Look, OK, you're going to explore girlfriends or boyfriends, but you need to be extra careful, because you have this in your blood and you could pass it to your baby. And if your girlfriend has this in her blood then you've got a potential chance of your baby being a full blown sickle cell carrier. So you've got to be extra careful.' 

So I think from about 12 I'll explain. I will always let them know about it, but to sit down and explain to them the chances I think I need to do it between 12 and 16, in that age, so that they know. Because, like I say, some kids go early, and I don't want to take that chance with my grandchildren, you know what I mean? If I could have prevented it with my children I would have done. But at least now I know I can help my boys with my grandchildren to prevent it happening again, and any chance of them having full blown sickle cell babies.

Footnote' if both partners are sickle cell carriers, each baby has a 1 in 2 risk of being a sickle cell carrier and a 1 in 4 risk of having sickle cell anaemia. There is also a 1 in 4 chance that the baby will not inherit the carrier gene from either parent and will therefore not be a carrier or have the condition.

 

Even though the letter said her son's health was not affected, she did not feel reassured and...

Even though the letter said her son's health was not affected, she did not feel reassured and...

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I mean, in the letter that you got, what did it say in the letter can you remember?

It said, 'Your son has - in his heel prick test, results show that he's got abnormal' - is it 'abnormal haemoglobins'? It didn't say that he was a sickle cell carrier. I just went through the leaflet and whittled it down, and knew it couldn't be any of the other ones. It could only be sickle cell. And it was case of 'Whoa!' Because I mean, I just didn't expect it. And it said, yeah, 'He's trace of haemoglobins - nothing to worry about, your child's health is fine. We would just like to talk to you about it.' But that doesn't reassure you. It really doesn't reassure you. It puts a spanner in the works and frightens you, to be honest. It didn't reassure me at all. 

And it said at the bottom of the letter, 'If you want to ring me, ring me.' Well I did. I didn't wait for her to come and see me. I rang her. I wanted to know there and then. Because like I say, when it comes to my children, I don't mess about. I want to know, there and then.

Did the letter say she was going to come and see you anyway?

Yeah, it said she was going to come and see me in January and this, that and the other, so. And then so it was a case of I then had to wait for her to come out to see me. But she explained everything to me and I did feel a lot more reassured, a lot more at ease [laughs].

Footnote' the word 'trait' is sometimes used to describe carrier status. Sometimes it becomes confused with the word 'trace' which can give the wrong impression that it is insignificant.
 
 

Waiting for her carrier screening results over Christmas was not good timing, but she wasn't...

Waiting for her carrier screening results over Christmas was not good timing, but she wasn't...

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Yeah, it was bad timing. I mean, it was a week before Christmas when it dropped on the door and it was case of, 'I don't want to hear that, the week before Christmas. ' I'd have rather have waited until the week after Christmas, because Christmas is a stressful time anyway for anybody, and to then to have that on your head, waiting and worrying. I mean, like I say, because I knew it was only trait I could sort of push it to the back of my mind. But it was still there all over Christmas thinking, 'Is he going to be all right? Is it him?' Then it was a case of, 'Well, is it me? Is it their dad?' And it was like, well - so it was, even though I pushed it back, it was still niggling, niggling, niggling. So like I say, it was a bad time to do it. It was a bad time to do it just before Christmas. 

How long did you have to wait for your results to come through?

A week, it was only a week.

OK.

Yeah, very fast. 

And you got a phone call about that, is that right?

Yeah, she rang me and then sent me the letter, just to confirm in writing. 

Were you worried in that week, or not really?

No, because I thought well, if it's me there's nothing I can do about it. It's too late, I'm thirty-two years old [laughs] and I can't change it. I've never been - like I say, I've never been ill with it, so it's not something that I've had to suffer with. If I'd have suffered with it, we'd have known a long time ago that I had it, wouldn't we? So I don't know, it was just mad.

 

Professional learning: She was anaemic in pregnancy, and wonders if that was because she is a...

Professional learning: She was anaemic in pregnancy, and wonders if that was because she is a...

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It's like I've been anaemic and iron, low iron, through both pregnancies. Now I'm wondering whether that's to do with me being a sickle cell carrier. Because not - I mean, yeah, okay, some women do get anaemic and that through pregnancies. But it's like I've had, I had kidney problems and I went very anaemic with that. So I'm wondering whether it's anything, that being a trait has anything to do with health or illnesses that I've had. You know what I mean? A lot of things have gone through my head thinking, 'Well, I wonder if it has had something to do with it? I wonder if it's helped?' You know what I mean? And wondering whether me having anaemia and low iron through my last pregnancy helped the baby produce sickle cell trait too. There's lots and lots of things have gone through my head and it's like, 'Hmm, I wonder if I can have answers for that?'

Footnote' Being anaemic during pregnancy does not affect the baby's chances of inheriting haemoglobin S and therefore being a sickle cell carrier. There is no evidence that a mother who is a sickle cell carrier is at increased risk of anaemia in pregnancy.
 
 

Professional learning: It helped to have a diagram to explain inheritance, and reassure her that...

Professional learning: It helped to have a diagram to explain inheritance, and reassure her that...

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[Sighs] I think he was about four days old now and everything was still a blur.  I just remember it's the normal heel prick test they do, but I do remember her saying that they will send it for the sickle cell test. So it was, I was informed of it and I was like, 'That's fine, not a problem, whatever tests he needs, then have them.' Like I say I don't mess. It's your kids, isn't it? So.

Hmm. So you did know that it was one of the things that they were locking for?

Yeah, yeah. But I was just shocked that it come back with anything [laughs]. Because he was just a normal, he's just a normal healthy baby. He looks normal. He's happy and...

And when she came to talk to you, what things did she run through with you? Things like the, sort of the inheritance pattern?

Yeah, how it can come down, and what's the chance of - because you've got like figures of little - not animals - little people figures and it shows you that a full blown sickle cell parent only passes the trait. 

Yeah, two sickle cell, two trait parents have the chance of passing on full blown, and are more likely to pass on just the trait.  But if you're just a sickle cell trait parent then you've got less - you're not likely to pass on the full blown sickle cell. So it was a case of, 'We're all only trait. I haven't got to worry about them. They're not going to full blown. But yeah, it showed me a lot and I understood a lot more and I knew that there's only that one-in-four chance of me then passing it on to any more children, if I do have any more children.
 
 

Professional learning: Getting results by telephone rather than a letter would still have been a...

Professional learning: Getting results by telephone rather than a letter would still have been a...

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What, is there anything they could have done differently, instead of sending you that letter, or the way that they worded it, that would have been better?

[Sighs] I don't know, I don't know what they - I think if I'd have understood it more before it happened, I wouldn't have been so worried. But because I've not had to look back in the family and worry about sickle cell, it was a case of, 'It's not in the family. Don't worry about it.' And I suppose I'd got that approach that my dad had got really, but now I know it's in the family, it's a case of, 'No, you do have to worry about it, because it can be passed down.' 

I mean like if they'd phoned you, would that have been better rather than sending it in a letter?

I don't know. I suppose either way it's just the same, isn't it? It's that, 'Whoa! What did you just...?' It's like I've just read it or you've just said it. ' What did you just say?' Or 'What have I just read?' Either way it's just as bad I think. But I suppose if you've got that person on the line, you can actually ask questions straightaway. Whereas I had to ring up. If she hadn't have been in the office I wouldn't have been able to speak to her straightaway. But I was fortunate that she was in the office and I could speak to her straightaway. But some people might not be that fortunate. And like I say it put my mind at ease that day. So I suppose yeah, if they'd have rung first I probably would've not been so worried. 
 
 

Professional learning: Being dyslexic, she finds reading long medical terms hard. She would have...

Professional learning: Being dyslexic, she finds reading long medical terms hard. She would have...

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As I say, I've just - new baby, I haven't had time and I should have had, I should have looked a bit more. It's just I've had so many things going on just lately, but I will get time to sit down and have a good, good read and know a lot, lot more about it. Because I do want to know a lot more about it. Because I find it difficult to read as well, and that's part of it. I think that's part of it. It's like it's a big chore to me, because of being dyslexic. I've, big words I don't understand so, I'll be honest, it's better if someone spoke to me and told me it. Because I'd understand a lot more if someone spoke to me than reading it. Because it's just gobbledygook, goes straight over your head, doesn't it? If someone's explaining it to you, say, and it's like if you don't understand a word you can say, 'Look, I'm sorry, I don't understand that word. Please explain it to me in a word, in a phrase that I can understand.' So.

That's quite an important thought, actually, for how people present information?

Hmm.

I mean, like something like a DVD or something with someone talking '

Yeah.

'about it might have been more helpful than'

Yeah.

'a leaflet. 

Because you do, you get words and it's like, 'Well, what's that? What does that mean?' It's like when it come through, 'haemoglobins', I was like, 'What's a haemoglobin?' And then of course I had to go through the leaflet to find out what a haemoglobin was. And it was like, 'Oh.' But it's like you say, big words to me don't mean nothing. So, if someone can explain it to me then I'll understand a lot more than trying to read a book.

Are there any other things that, from your experiences, that you'd want to say to health professionals or the health service about how, you know, the information you've had and the care you've had?

Just a case of don't write a letter like I got, [laughs] because no matter how much they try and put it in, 'Don't worry', a parent is going to worry, especially when you've got a new baby in the house. You're going to worry. Don't do it like that. You've got to find another way of trying to explain to a parent without frightening them. I know it's only a trait but you still worry. If your any parent, you're going to worry. It's your child's health. 
 
 

Professional learning: She would have liked to know before pregnancy that she was a carrier.

Professional learning: She would have liked to know before pregnancy that she was a carrier.

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Were you ever offered screening in pregnancy?

No. No.

Would you have liked to have had screening in pregnancy, rather than after the birth?

' I'd like to have known before, before pregnancy. At the end of the day I had tests years ago which should have, I should have been told there and then, 8 years ago, whether I was a carrier or not, prior to having children, and then I wouldn't have had that risk, or that shock of finding out that my child is a sickle cell carrier. You know what I mean? It's a case of I'd have known that there was a maybe chance before having him, with all three of them. So, you know, it's a case of you find out 8 years later after you've had three children that you're a sickle cell carrier, and you've already purposely asked for the test. So.

I mean, what - it's hypothetical so it's a bit difficult to answer sometimes with these questions - but if you'd ever found out in one of the pregnancies that you were a carrier, what would you have been thinking then?

I'd have been concerned for my child's health. I'd have then had to make sure that the child's, the children's dad wasn't, because like you say you've doubled your chances* of having a sickle cell baby, and I don't think I'd want my child to suffer that. Because I know it can be a nasty thing to have to go through, and any pain's bad enough, never mind having to deal with it your whole life, having to go through anything your whole life. And if I could prevent it then I'd prevent. I mean, I don't know, because I don't agree on abortions. I personally - I don't, I don't criticise anybody for doing it - but me personally wouldn't do it. But I don't know what I would do in that situation. It's then something you've got to think about again, isn't it? It's like, if there was any way I'd have an abortion was through severe disabilities, but they'd have to be really severe. 

So then it's a case of, 'Well, what do I do?' What do you do for the best? So, at least now I know, if I do go and have more children I've got the chance to check out before I go anywhere and have any more. And that I can check my partner and make sure he's all right before, you know what I mean? I can really look into it before. I mean, I looked into having my kids anyway. It's not something you just, I just did off the spur of the moment. It was a case of, 'I'm ready for my children', and so it was a case of - yeah, I'd have to really look into it and make sure.

Footnote' If only one parent is a carrier there is no risk that their baby can inherit a sickle cell disorder. It is only if both parents are carriers that there is a 1 in 4 risk of having a baby with the condition.
 
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