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Interview 19

Age at interview: 36
Brief Outline: Mother who knew she was a sickle cell carrier. Her partner believed he was not a carrier, but her third baby was born with sickle cell anaemia. In this pregnancy she had CVS; the baby is a carrier only.
Background: Registered childminder, with three children aged 13, 11 and 9, now pregnant with new partner. Ethnic background/nationality' Black African.

More about me...

This mother is in her fourth pregnancy. She has sickle cell in her family and knew already she was a carrier. In her first pregnancy her partner was abroad and could not have carrier screening, so she decided to have amniocentesis anyway to check. The baby was unaffected. 

Then she had two pregnancies with a new partner who assured her he was not a carrier, so she believed she would not need any testing. She reflected on how common it is for people to believe wrongly that they cannot be a carrier because they are fit and active.

The first baby with him (her second pregnancy) was unaffected. In her third pregnancy she had an infection for which her partner also had to be treated, which involved a blood test at the same time. The results showed he was in fact a sickle cell carrier. By that time she was over 20 weeks pregnant. She felt it was too late to do anything and did not want to risk an amniocentesis. Her daughter was born with sickle cell anaemia. The daughter is now 9 and has been in very good health, with no crises, but the mother knows from family and friends' experiences that this could change at any time, and stroke is a possibility. 

She has had good support and information from her sickle cell counsellors, but she has had a few problems with her daughter's teachers and staff at her local GP surgery not being fully aware of the needs of children with sickle cell disorders.

She is now with a new partner and was about 17 weeks pregnant at the time of the interview. As soon as she discovered she was pregnant, she asked her partner to be tested and he too is a carrier, so she decided to have a diagnostic test (CVS) as soon as possible. The results showed that the baby is a carrier only, but she was sure she would have terminated the pregnancy if the baby had the condition. Even though her daughter is well, she feels it would have been difficult to cope with another child with the condition, particularly given the anxiety and uncertainty about their future health. She believes screening and diagnostic testing are important and advises other parents to go for screening so they are informed and can make a real choice. 

 

In her second pregnancy she knew she was a carrier, but her then husband believed he could not be...

In her second pregnancy she knew she was a carrier, but her then husband believed he could not be...

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Well, I think you just take these things for granted. You just take these things for granted, and you know, as much as I would like to protect all my children, or every pregnancy, I had my trust in my husband as well - then husband - that, you know, he must know what he's talking about. He knows this is a big chance, he wouldn't want this to happen to, you know, a child. But I never knew how, you know, ignorant he was [laughs] about all those things - so I just, I just took it for granted really.

So he actually, I mean it wasn't just that he said that, 'I don't want to go for testing.' He kind of said, 'I'm AA [not a carrier].'

Yeah, he said he's AA - that he's ok. I think it's kind of believed to be AA is like when you're not weak, when you're not tired, you're not anaemic, you know, you're active, so that, I mean, you're a big man with big broad shoulders, with big bones, you know - you can do things that the women cannot do. So I think that, in his books, means, you know, not being sickle, not having the sickle trait. But then he has it.

What was his reaction to getting the test result?

'[pause] I think he was a bit, he wasn't sure. It's like, 'Well, if I have it, then I have it.' He just put up a front. But he kept praying, he kept, he knew in himself that if anything happened - because then I was still pregnant when we got the result - if the baby was sickle cell then that would be his fault. He knew that. And that, you know, he, [pause] he felt really guilty about that - really guilty. I mean, you know, it would have only taken you an hour to have a test done. Well then, you know? But then it was too late.

Did that cause problems between you?

Well, it didn't. It didn't really at first, because my daughter is one of those ones that kept most of her baby blood when she was a baby, so she didn't have any problems at all. But when it now comes to her going on a penicillin which has to be taken in the mornings and in the evenings, you know, we both have to take responsibility for that. When it came to wrapping her up, you know, properly for her to, you know, go outdoors in the cold, we would have to take responsibility for that. But [pause] he left, you know, everything up to me. That's the point that I had to make him realise that this is not my responsibility - although I'm the Mum, I'm the one that stays at home to look after the baby - but then this responsibility has got to be shared. That's when it dawned on him. And when he saw the amount of, you know, penicillin she had to take in the morning and in the night, it didn't all go well with him - he felt really bad. That's when he really felt it.

Did you feel angry with him?

Mmm, [pause] I wouldn't really say anger with him. I would say very sympathetic towards my daughter. I felt guilty. I felt bad. I felt, you know, as a mother I should have taken more responsibility and I didn't really feel good about myself for some time, and that really worried me a lot. I had to deal with that on its own. But thank God I've moved on from there. And that's why when I got pregnant again, after nine years, I thought I have to do this properly this time.

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.

 

Having seen the effects of sickle cell anaemia in her family, she thinks screening is the best...

Having seen the effects of sickle cell anaemia in her family, she thinks screening is the best...

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Well, my, [pause] my advice would be just do it. Just do it. I mean, if not for the parents, if not for the effects that it might have on the parents themselves, think about the future quality of life that the children are going to have. 

Even if, at the end of the day, one decides to go along with the pregnancy, then you are prepared. You know all your info how to mange it, you know how to manage yourself. You know, you are aware of the care and support around you, you've prepared yourself. So it's, it's the best decision any mother can make, any parent can make. Especially when you have something like sickle cell to deal with. I have only been lucky. Suppose I wasn't. I've had families that have died just because they don't have the care, support and medical support that they should have got in to deal with it. I have, one of my uncles has survived it up till 6, 9 years [ago] but that was because he was could afford the, the medical [pause] things, support that he needed. But suppose you can't and,you've taken the test on time and you've made a decision to keep the child or not - it would help you to make that decision and be prepared. 

 

She feels she couldn't cope with another child with sickle cell anaemia. Her daughter has been...

She feels she couldn't cope with another child with sickle cell anaemia. Her daughter has been...

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Well, I couldn't - it's not like I wouldn't want - I wouldn't be able to deal with another child with sickle cell. As I keep saying, I've only, I've been lucky so far. Who knows what might happen tomorrow? You know, some of them, some would, some have stroke. My friend's daughter, she had stroke. She was - she's okay until she got to the age of 10 and then she started, having problems. It was just one crisis that led her into the condition. And she's still suffering from that stroke. So can you imagine if you had two children, that has the same condition, how would you be able to deal with it? [pause] Physically, psychologically - I think that would be too much, when you could have made a decision.

 

She comes from a strongly Christian family, but she would end a pregnancy if she thought the...

She comes from a strongly Christian family, but she would end a pregnancy if she thought the...

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OK. I was just going to ask about your daughter - you, you mentioned that your first thought was that you would go for adoption [if her daughter turned out to have sickle cell anaemia].

Yes.

Did it ever cross your mind in that case to end the pregnancy, or was that not an option for you?

That wasn't an option for me, because I was far gone in the pregnancy at that point.

If it'd been earlier, was that something you might have considered?

Yeah, if it had been earlier, I would have had an abortion.

For some people, kind of religion plays a part in their decision making. I don't know if that's the case for you. What kind of factors were you thinking about in thinking about abortion and adoption, whether to continue?

Well, religion or no religion - well, I've come from a very religious background. My granddad is a Reverend - well, a Reverend headmaster. My Dad is an educationalist as well, he's a teacher. So , but sometimes I think you just have to be very practical about things. I want to be a realist, I want to be very realistic about things. I think every child deserves a right to life, but I also think every child deserves a right to a good life as well. A fulfilled life. At least health is one thing you cannot buy, and if a child wouldn't have a good quality, life quality, why would I bring that child into the world? So I'd rather not put my child through that and have an abortion, have an abortion instead.

 

They had a long wait for the appointment. It was painful, but she was determined to have the test...

They had a long wait for the appointment. It was painful, but she was determined to have the test...

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So tell me a bit more about having the CVS, when you went along together that day. What was it like?

I was a bit scared at the beginning. I was, but then I was quite determined to go along with my decision' have the test, take the test anyway. And for the fact that I've done it once before, even though it was a long time ago, I was very prepared for it. And the waiting time was a bit [laughs], was a bit of a drawback for me, because you had to wait so long for the test itself, to be waiting - to be done. All I wanted was to get in there, do what I had to do and have it over and done with. 

Was this the waiting time sitting in the waiting room, or?

Sitting in the waiting room.

Ok, did you have to wait a long time?

Yes, yes. We had to, we spent almost six hours doing that test, just for that test that day, which didn't really help [laughs] the situation. It was like all panic at the end of everything. But I was determined, I was very determined to go along with it, otherwise I would have picked up my coat and just run off. But then I was quite determined to have it. And because my partner was there as well to support me, it made things a bit easier for me. 

What was it like for him - have you talked to him about how he felt watching it? 

Because I have to take, I had to do some scans, they needed to scan me in another room before I went into the test room - so I mean, he's never done any of these things before so he was thinking [laughs] oh well, everything was going to go as smoothly as the scanning bit. But then it's not as easy as that. So when we went into the room he said, he just held on to [my hands] - because he had to stay above my head because of the positioning of the nurses and the doctor, so. At a point he had to close his eyes - I was watching him - he just closed his eyes, he couldn't look [laugh], whereas I was telling him to keep an eye on things. Well, he just closed his eyes, and just held on to me tight.

It was a bit painful. It was really painful, not just a bit painful, because, I think because of the position of the baby the needle wouldn't go in. They couldn't just put it in straight and bring out the tissue. They had to go in and push through again. But I just had to keep still, because that was all that mattered to me at that point. And I didn't want it to go wrong, I didn't want to have to go back and for retesting, so I just had to keep myself together, hold myself together. I took all the pain.

How long did it take, the procedure?

Mm, it only took about, I think three to five minutes in all, yeah.

That's quite a long time to be feeling that sort of thing?

Yes, yes it is, especially when they had to go in from one angle and push up or down from another, from right inside you, it can be really painful. I thought I was, I lost feeling in my leg [laughs] after the test, that's what I thought. Because I couldn't really move my leg. But thank God for painkillers. It wore out, in time it wore out and I was back to myself again. 

Footnote' most women do not find CVS and amniocentesis as painful as they expected, but a few do find it very painful. Most women who have the test still feel it is worth it to find out for definite to if their baby is affected.

 

She had to call to ask about her CVS results because she couldn't bear the uncertainty. It was a...

She had to call to ask about her CVS results because she couldn't bear the uncertainty. It was a...

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This - well, because my consultant had gone away, because he said it would take about a week for me to get the test result - unlike in those days, when I was just phoned up the third day, and there I was with my test result. But this, I had to wait for a week and no news, no letters, no phone calls, so I had to call them [laughs] - I had to call them that, 'Look, I haven't been able to sleep, I really need this test [result], otherwise [laughs].' And they said not to worry, that they would call before the end of the day, that they'd got some part of my test result but they still need some of it to come through, because that wasn't the only test that I took. 

So, by the time the doctor called me - the doctor called me herself to tell me that she would be phoning me first thing in the morning, but 'Don't worry, everything is well.' And since she gave me that clue that everything went well, that everything is well, that I shouldn't worry, I was a bit pleased for myself. And when she called me in the morning she told me that the baby is AS [sickle cell carrier] as well, he's not SS [does not have sickle cell anaemia]. So, and I think that's enough for me to hold on to. That's, the baby's AS, yes. well, I'm AS and the Dad is AS, so that will do me, that's enough for me.

 

She discovered her partner was a carrier late in her third pregnancy. She planned to have the...

She discovered her partner was a carrier late in her third pregnancy. She planned to have the...

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So with your, your second child who was the, the your second son, did you have any testing?

Not at all.

And your partner wasn't screened?

He wasn't, not at that point, no. Because I've always believed what he said to me [laughs]. I took his word for it. But with my daughter I had an infection in pregnancy and he had to be treated as well, so I talked him into taking some other tests, and he took it right there at the hospital. That's when I realised that he's got, he has a trait, the sickle cell trait. And at that point I went to the hospital to talk about it, counselling. You go for the counselling, you talk about it, and [pause] because I had people in my family that have had sickle cell, I've seen the way some of them cope. I've seen the way some of them couldn't really cope - have had stroke, have died. I wasn't really prepared to be lumbered with a child with sickle cell. I decided then, during the pregnancy, that if the child was sickle cell, that I was going to give the child up for adoption. 

But then, I mean, I couldn't deal with the fact that I had a child growing inside me for nine months - by the time I had my baby, even though she was diagnosed with sickle cell, I not in a million years wanted to part with her. And she's, well, she's a girl as well - I've had two boys, so. I had to go through the counselling. I was given information about it, I was told how to manage it, and to deal with it, and I took it a step at a time, and touch wood, thank God, she's a very healthy girl. She's never had any crisis, she's never had any disturbances through sickle cell. She's as healthy as my other two kids. 

 

When she moved to a new area she had to explain the needs of children with sickle cell anaemia to...

When she moved to a new area she had to explain the needs of children with sickle cell anaemia to...

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Well, yes, yes, because when I moved into the area - because normally children with sickle cell do get the flu jab every year - when I moved into the area, I went to the GP's to arrange one for my daughter and they said to me she's not allowed, she can't take, she's not allowed to take one. And I'm like, 'She's got sickle cell. She gets it, she's supposed to get one.' And it's like, 'No, she's not.' And I'm like, 'Okay, can you talk to a nurse practitioner about it, or talk to a doctor about it?' And she went in to talk to the practitioner. And she said, 'Yes'. Where I'm coming from, I mean if you took a child to any clinic in the south east, in the London area, then they're quite aware about these things, because there - sickle cell is a black Afro-Caribbean thing, so a lot of people around there would know about it. But where there's , there's not much ethnic minority, they know less about it. So I think it's just the awareness. 

Was this a receptionist who was'

This - yeah, this was a receptionist. And apart from that, I've had a problem with the school as well, because maybe they haven't had so many children with sickle cell, with that kind of condition. I mean if it were cancer, diabetics, and stuff like that, they would understand it better. But with sickle cell, it's like they don't know. So I've had to like, get them information about it, get my doctor to write a letter about it, get the nurse practitioner to send some more information about it. So -

What sort of issues has that been over? Like going out in the playground when it's cold and that sort of thing?

When it's very cold, like for instance last week, she had to stay in the cold and watch the other kids do PE, just because she forgot her PE kit at home. And I'm like, even if she bring, she had remembered and brought her PE kit into school, she would still not be allowed to do outdoor PE. I really took it up with the educational authorities and I demanded a written apology from the teacher, because he knew about it. 'She knows how to manage herself - she knows when she's playing out in the playground and she's really cold, she knows she has to go in. You know that.' She's been, she's missed some of her playtime as well, just because she had to get up in the middle of classes to use the toilet. They drink a lot - as such, this necessitates their using the toilet more than any other one of their peers, so why should she be punished for that? So there's been issues that I wasn't really happy with, but I think everything is settling now because I've had to have a meeting with the Headteacher, and he's a bit understanding.

 

She encourages her 9-year-old daughter and other family members to share responsibility for...

She encourages her 9-year-old daughter and other family members to share responsibility for...

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And I know I've got my, the counsellor is always there and I - because she sees the consultant in the hospital from time to time. So I just, I have a book that I put, I write my questions in for the time, for the next time we visit the clinic, and she keeps a book as well. If she has any problem I can't answer to, I always refer back to her book. And she can write them down and ask the doctor when next she goes to the hospital. Because she needs to know about these things. It's her condition, not mine. 

I can only guide her and support her to some extent. She is going to be dealing with it throughout her life, and her brothers are very aware of it as well. We go to seminars together. We go to the hospital together when we have to. They look after her. When she's playing out in the cold not wearing her gloves, or not wearing her scarf, they drag her in and make sure she wears it [laughs]. When she's drinking too much cold water or ice cream when I'm not there, they know they have to give her something warm to drink. When it's cold in the house, they know the heating has to be on. So, it's quite important. It's important. 

 

She parted from a boyfriend who had sickle cell anaemia, but has regretted this now she has a...

She parted from a boyfriend who had sickle cell anaemia, but has regretted this now she has a...

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Has your experience with your daughter changed your perception of the condition, compared to what you knew about it at that point?

Well, yes. Because right from being a teenager, I've always been educated about these kind of things, and I lost a very good relationship just because the chap was, had sickle cell. I didn't want to know him, as soon as I realised that he had sickle cell. And when I had my daughter and she turned out to be sickle cell, it changed my perspective entirely, and I had to write letters, apologising, looking for phone numbers to communicate with this guy, to really really talk to him, because I now saw the condition in a different way.

When you split up from him was that partly because you were thinking, 'I wouldn't want to have children with someone with'...?

Sickle cell.

Right.

Yes.

Would you feel any differently about that now?

I will. I will, definitely. [pause] Because as much as possible I don't shy away from the fact that my daughter has sickle cell. Anybody that works with her, any close friends I have, they need to know that my daughter has sickle cell, in order to know how to deal with it. Well, my, one of my friends made a statement and I broke up with that friend just because of that.

What did she say?

Well, we were just making jokes. She had boys, and one of her boys is very fond of my daughter from when she was a baby, so we just make jokes like, she makes the joke that, 'What are you trying to do? Oh, you're [daughter's] boyfriend now, since you look after her so much, who knows?' And she - no, somebody said that. And she's going on like, 'Never, that my daughter - my son would never marry her, because.' And that was it. And that was it. I mean, how insensitive can somebody you called your friend be? And that was it, that was the end of the friendship up until now. So '

 

Professional learning: Her husband believed he could not be a carrier because he was fit and...

Professional learning: Her husband believed he could not be a carrier because he was fit and...

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Well, I think you just take these things for granted. You just take these things for granted, and you know, as much as I would like to protect all my children, or every pregnancy, I had my trust in my husband as well - then husband - that, you know, he must know what he's talking about. He knows this is a big chance, he wouldn't want this to happen to, you know, a child. But I never knew how, you know, ignorant he was [laughs] about all those things - so I just, I just took it for granted really.

So he actually, I mean it wasn't just that he said that 'I don't want to go for testing', he kind of said 'I'm AA.'

Yeah, he said he's AA [not a carrier] - he's ok. I think it's kind of believed to be AA is like when you're not weak, when you're not tired, you're not anaemic, you know, you're active, so that, I mean, you're a big man with big broad shoulders, with big bones, you know - you can do things that the women cannot do. So I think that, in his books, means, you know, not being sickle, not having the sickle trait. But then he has it.

What was his reaction to getting the test result?

'I think he was a bit, he wasn't sure. It's like, 'Well, if I have it, then I have it.' He just put up a front. But he kept praying, he kept, he knew in himself that if anything happened - because then I was still pregnant when we got the result - if the baby was sickle cell then that would be his fault. He knew that. And that, you know, he, [pause] he felt really guilty about that - really guilty. I mean, you know, it would have only taken you an hour to have a test done. Well then, you know? But then it was too late.

Did that cause problems between you?

Well, it didn't. It didn't really at first, because my daughter is one of those ones that kept most of her baby blood when she was a baby, so she didn't have any problems at all. But when it now comes to her going on a penicillin which has to be taken in the mornings and in the evenings, you know, we both have to take responsibility for that. When it came to wrapping her up, you know, properly for her to, you know, go outdoors in the cold, we would have to take responsibility for that. But [pause] he left, you know, everything up to me. That's the point that I had to make him realise that this is not my responsibility - although I'm the Mum, I'm the one that stays at home to look after the baby - but then this responsibility has got to be shared. That's when it dawned on him. And when he saw the amount of, you know, penicillin she had to take in the morning and in the night, it didn't augur well with him - he felt really bad. That's when he really felt it.

Did you feel angry with him?

Mmm' I wouldn't really say anger with him. I would say very sympathetic towards my daughter. I felt guilty. I felt bad. I felt, you know, as a mother I should have taken more responsibility and I didn't really feel good about myself for some time, and that really worried me a lot. I had to deal with that on its own. But thank God I've moved on from there. And that's why when I got pregnant again, after nine years, I thought I have to do this properly this time.

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.
 
 

Professional learning: She would consider ending a pregnancy, even though she comes from a...

Professional learning: She would consider ending a pregnancy, even though she comes from a...

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I was just going to ask about your daughter - you, you mentioned that your first thought was that you would go for adoption?

Yes.

Did it ever cross your mind in that case to end the pregnancy, or was that not an option for you?

That wasn't an option for me, because I was far gone in the pregnancy at that point.

If it'd been earlier, was that something you might have considered?

Yeah, if it had been earlier, I would have had an abortion.

For some people, kind of religion plays a part in their decision making. I don't know if that's the case for you. What kind of factors were you thinking about in thinking about abortion and adoption, whether to continue?

Well, religion or no religion - well, I've come from a very religious background. My granddad is a Reverend - well, a Reverend headmaster. My Dad is an educationalist as well, he's a teacher. So, but sometimes I think you just have to be very practical about things. I want to be a realist, I want to be very realistic about things. I think every child deserves a right to life, but I also think every child deserves a right to a good life as well. A fulfilled life. At least health is one thing you cannot buy, and if a child wouldn't have a good quality, life quality, why would I bring that child into the world? So I'd rather not put my child through that and have an abortion, have an abortion instead.
 
 

Professional learning: The first person she turns to with any queries is her specialist sickle...

Professional learning: The first person she turns to with any queries is her specialist sickle...

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I think I've always had good information and support at every, well, at every stage at least as far back as I've been dealing with this situation. Well, I think I've had a wealth of information. Well, I know I know where to go, I know who to call, I know where to get my support from, so in all that's been very satisfactory to me.

And with your daughter, when she, when you discovered she was, she had sickle cell anaemia, were you referred to a specialist counsellor or who came to advise you?

Yes, yes. There was, we were invited to the hospital to see the specialist counsellor.

And do you have regular contact with the counselling services or'

Yes, yes we do. Even for the, even for the most, for the most un-useful issues [laughs]. I mean, I jump on the phone, I phone her, and if she's not there, she's always calling me back. If she can't deal with it, referring me to the right authorities. 

Did you talk to the specialist counsellor this time around about the screening issue?

Yes. She was the first person I called. And I told her, 'This is my situation.' And she arranged the tests then for my partner straight away. It only took about a week. And she arranged for, she phoned the doctor in the hospital, my daughter's consultant and arranged everything through him. So we were first invited for the consultation to talk about it, and given information about it, then after that we got the appointment for the CVS. 
 
 

Professional learning: In her current pregnancy, waiting the few weeks between discovering she...

Professional learning: In her current pregnancy, waiting the few weeks between discovering she...

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Well, since then, I've had two more children, but then I have a daughter with sickle cell, and that was nine years ago. Since getting pregnant - well, since I realised that I'm now pregnant - I'm about 17 weeks gone [at the time of the interview] - when I took the test and I realised that I'm pregnant, I decided to go through it all over again, to take the CVS. I talked to my partner about it for him to have his blood checked and it came out he's got sickle trait as well. So that leaves us no option but to arrange to have a CVS, which I've done. It wasn't particularly easy. I mean, the joy of every woman would be to be pregnant, and to carry on with your pregnancy, but then to, to be lumbered with a decision, with the thought that something could be wrong with your child, and along the way you might have to one way or the other not go through with that pregnancy can be very disturbing. 

For many nights you can't sleep, you're not focused, all you think about is what happens next. And with a CVS I think you need to wait for about 11 to 12 weeks for you to be able to take the test. [pause] It wasn't easy waiting for that long to have a test done when you already have [pause] a, a pregnancy growing, you're growing, with that pregnancy, you're seeing it everyday, you're like, [pause] it's not, it's very unsettling. But we eventually got the appointment to go for the CVS.
 
 

Professional learning: The receptionist at her new GP surgery was not aware children with sickle...

Professional learning: The receptionist at her new GP surgery was not aware children with sickle...

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Well, yes, yes, because when I moved into the area - because normally children with sickle cell do get the flu jab every year - when I moved into the area, I went to the GP's to arrange one for my daughter and they said to me she's not allowed, she can't take, she's not allowed to take one. And I'm like, 'She's got sickle cell. She gets it, she's supposed to get one.' And it's like, 'No, she's not.' And I'm like, 'Okay, can you talk to a nurse practitioner about it, or talk to a doctor about it?' And she went in to talk to the practitioner. And she said, 'Yes'. Where I'm coming from, I mean if you took a child to any clinic in the south east, in the London area, then they're quite aware about these things, because there - sickle cell is a black Afro-Caribbean thing, so a lot of people around there would know about it. But where there's, there's not much ethnic minority, they know less about it. So I think it's just the awareness. 
 
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