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You must have discussed the possibility of having a, like a CVS or an amniocentesis with the staff, the test to see if the baby’s got it. Did you ever think briefly you might have it, or?

Yeah. Well, the lady talked about it, but then she never booked me an appointment. So…

Would you ever have thought about it, do you think if, if shed been more…?

Yes, if she were more helpful probably, I think I would have done it.

But because it was my first pregnancy I didn’t know nothing. They just, when they send me an appointment letter and the date, that’s when I’ll go. If they don’t do nothing, I’ll just sit at home. I don’t know what to do.

Did you have specialist sickle cell counsellors?

Yeah, after, when I gave birth.

Ah, but not before?

No, not before.

So during pregnancy this was just the midwives?

Yeah.

OK. And how do you feel about the information that they gave you about carrier status and about the possibility of diagnostic testing? Was it well explained to you?

No, not really. Because I just got to know more about it when the specialist, when they found out that my son had it. That’s when I got to know about it more. But then it was just like a little, little information pack.

I think if – I don’t know, if they were a bit more trained or – not trained, but know a little bit about the sickle cell, that would be helpful to me, because they would have given me advice then, before. But because I think the lack of knowledge on sickle cell disease, so that’s why probably they didn’t know what to say to me. Because I was going there, everything seemed – they knew I had the trait. And the partner, they knew my partner didn’t want to. But when I told them he didn’t want to, they were like, ‚ÄúOkay, then. That’s it.

Did they ever offer to refer you to one of the specialist sickle cell counsellors at that stage?

Well, they gave me a number, a sickle cell centre number, to go to. But at that time I was thinking, ‚ÄúThey’re saying it’s not a disease. Why should I need to go there? at that time. So I was like, ‚ÄúOh, I’m not going to go there. So I never went.

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I believe it, hes got it. But because I’m a Christian it’s hard for me to believe deep down, because it’s just – I don’t know, because I believe God’s capable of doing anything, to heal whatever. It might be strange to a human being, they might think, ‚ÄúOh, it’s impossible, it’s impossible. But for me, deep down, I know God does things in his own way. What’s impossible to us is possible to him. So I know he might have it. But one day I know – it might sound strange – but I know one day he won’t have it. So that’s how I live my life and just hoping one day.

‚Ķ I have faith God will do, but I still give him the medicine. I’m not going to stop the medicine because I have faith God will do it, and then stop. No. And when I pray, I say, well, ‚ÄúI do believe. I tell God, ‚ÄúI do believe you’re going to heal, but I’m giving him medicine. And if the medicine won’t treat, won’t heal him, then you do it. But I’ll still give him the medicine. So I’m not going to stop the medicine [laughs]. No.

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The big thing that – it’s not like a regret – but I would have changed is that I wouldn’t get pregnant at all if I knew that I was AS [sickle cell carrier]. Because I didn’t know, my partner, if he was AS or SS [had sickle cell anaemia], so if I knew that I was AS before, I don’t think I would have got pregnant. From not knowing what he is, I wouldn’t get pregnant at all‚Ķ. Because theres so many people out there that don’t even know they’re AS or SS. So I think they should just find, I don’t know if they could find a way of screening people before, just to see what they are, people to know. Because it’s too late when you’re pregnant really, to find out you’re SS, SC [have SC disorder], whatever. Because it’s really too late. If they’ll find a way of screening people, so people would know what they are, what they have beforehand. Because theres too many people out there don’t know what they have, and then go and make babies, and the baby will be sickle cell. And then well just have more sickle cell babies, and then it’ll just carry on and carry on and carry on till when?

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Midwives and GPs, they probably know more about it than me. But I think they should have more midwives or GP trained on that. Because this country is a multicultural country, so they should know about sickle cell, other peoples diseases, just what diseases from other countries and stuff. So we have thalassaemia or whatever it is – they should know about all these kind of things, sort of provide better information to people. Because theres not really a point in going to a GP who don’t know what it is, what sickle cell is, himself, because he won’t give you good information on the disease.

Footnote Sickle cell disorders and beta thalassaemia major are genetic/inherited conditions, and therefore can affect anyone. The highest prevalence of sickle cell is found amongst Black Caribbeans, Black Africans and Black British. The highest prevalence of beta thalassaemia is found amongst Cypriots, Italians, Greeks, Indians, Pakistanis, Bangladeshis, Chinese and other Asian Groups. Both genes are also found in the northern European population.

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I just wanted to tell the sickle cell people, the sufferers, the patients, that most people think sickle cell is a shameful disease, they shouldn’t talk about it. But it’s not. Because if you talk about it to people, your family, friends, that’s the people will be able to help you when your child gets sick. They’ll know what to do. If you keep it to yourself, you’re making it worse, because you’re suffering alone with the child and that’s not right. So you need to seek advice at the specialist sickle cell centres. And most people are scared to go there because they think it’s shameful to go there.

And it’s not your fault. It’s not your fault you have it. You’ve got it from your ancestor, whatever. It’s not you. It’s not like HIV that you slept with somebody or something like that. It’s just something in your blood. And you didn’t do nothing bad to get it. It just happened to be there. So people shouldn’t be ashamed because they have it or because their children have it. Because no one chose to have it. If it was something we choose to, probably we all would have been careful and used protection, whatever. But it’s just something in your blood and you shouldn’t be ashamed for.

Why do you think people see it as a shameful condition?

Because I actually know people that got it, and from reading the books. I have a friend, I’ve got a friend that has got it. I know shes got it, because I know she takes the same medicine my son takes. But she doesn’t tell me that shes got it. That’s really sad, because it’s a disease and I’m her friend, I should know shes got it and help her. When she goes to the hospital I should know. She thinks it’s – I don’t know what she thinks. I don’t know what she thinks. Shes probably ashamed of it. But I don’t think, she shouldn’t be ashamed of what you have, really.

I think people, because most people make fun of people that have it and – because I’ve heard people saying, Oh, that boy got sickle cell, ug, you see? I don’t know. I think more black people need to know that sickle cell is just a disease. Theres not, you can’t laugh because someones got sickle cell. It’s a disease and a majority of us have got the trait. So it’s not good to laugh when someones got a disease and when someones suffering. Because you don’t know, it might happen to you, or your children might have it or you, down the line.

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The information from the midwife, it’s just a little A4 sheet saying, ‚ÄúSickle cell is this. Some little paper booklet thing. So that wasn’t really much. But the one I got from the specialist really tells you what sickle cell is, what it does, and to just say more information, how you have to live, what you have to do, massage, when the baby gets ill you have to do this, you have to check the palms and stuff like that‚Ķ It’s just a booklet, that when my son gets ill I go to the book, I go and read the book and see what I have to do, and if I have to call the ambulance or, you know, it just tells you what to do if, in case your son gets sick. But that from the NHS just says, ‚ÄúSickle cell is this, a disease from the African-Caribbean background and something to do with the blood. And that’s it.

Footnote The highest prevalence of sickle cell is found amongst Black Caribbeans, Black Africans and Black British. The highest prevalence of beta thalassaemia is found amongst Cypriots, Italians, Greeks, Indians, Pakistanis, Bangladeshis, Chinese and other Asian Groups. But both genes are also found in the northern European population.

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My health visitor, she asked me if I wanted the baby to get the heel test. I said, ‚ÄúYes and she said I need to sign the form. So I signed the form and then she got it done. And then after a few weeks then they phoned me. No, no, the specialist phoned me and said she wanted to see me. But at that time I knew already, so I just guessed. I said, ‚ÄúWhy she has to come to make an appointment to see me at home? So I was already, I said to myself, ‚ÄúWell, I know. If shes coming, then my son’s got sickle cell, because if he didn’t they would write to me. If shes coming in person, it means hes got it. So I was expecting it anyway.

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And did you know whether the father of the baby was a carrier or not?

Well, I did talk to him about it, because I said to him, If I’m AS, if you’re AS we, the child might be, might have the diseas. But he was like, Hmm He was scared because every time we book an appointment to go to see the midwife to do the blood test, but he never went, because – I don’t know, he was scared. He was like, Oh He doesn’t want to go.

So he never went?

He never went.

How did you feel about that? Did you want him to go? Did you want to know whether he was a carrier?

Yes, I did want it at that point. I did want it, to know if he was. But he didn’t want to know. So I thought, I thought he didn’t want to know for a reason. I don’t know. I guessed, in a way I guessed that probably hes got something he doesn’t want me to know. So at that point I was like, Okay

So do you think he did know?

Yeah. I think he did know, because a boy – he was bringing up excuses like, oh, hes scared of needles. I’m thinking, No, you’re a big boy, big man. You can’t be scared of needle, [laughs]. So I think, I personally think he knew he had it, because when I told him, I’ve got sickle cell trai he was like, Oh, oka, like he knew about it already, so.

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

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Abortion for me is just like a big sin. So I couldn’t do it. But I think if I knew, if theres a way I could do a blood test before even getting pregnant that would be a different thing to me, you see? Because I would know myself that I can’t have a child with someone who’s got sickle cell. It’s true you can’t choose partners but the child’s innocent. It’s me and the person that’s bringing up that child, giving the child that disease. It’s not the child himself. So it’s two people.

Would you say to people, then, based on your experience, that it would be better to be tested before pregnancy?

Yeah, before. Yeah, I would just reckon to all the – I don’t know, if you’re from an African background, or Caribbean, I would personally say to, if you want to marry someone or get involved, for my point I think you have to choose who. Well, you might be in love with the person, but at the end of the day it’s the child that will be suffering, not you two. So you have to choose who – be careful really to know.

Footnote although sickle cell is more common among people of African origin, it can also be found in people from other ethnic backgrounds, including white people.

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She made another appointment for me to go if I wanted, if I wanted them to screen the baby and see if the baby had it. But at that time I didn’t want to know, because I didn’t want to be stressy or – because if he had it, if I knew it from when he was in my stomach, it wouldn’t make a difference for me.

Did you feel anxious anyway because of the uncertainty in the rest of the pregnancy?

Yeah, I did.

What was that like?

Well, it was like, Ooh I just worried for, I don’t know, for so many stuff – how I would cope? How life would be? And so on. So if – because I didn’t know the child was sickle cell, but just worried, If he is, how will he be? I’m on my own, how am I going to cope Because like I’m really feeling sorry for the unborn baby than myself.

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My health visitor, she asked me if I wanted the baby to get the heel test. I said, Ye and she said I need to sign the form. So I signed the form and then she got it done. And then after a few weeks then they phoned me. No, no, the specialist phoned me and said she wanted to see me. But at that time I knew already, so I just guessed. I said, Why she has to come to make an appointment to see me at home So I was already, I said to myself, Well, I know. If shes coming, then my son’s got sickle cell, because if he didn’t they would write to me. If shes coming in person, it means hes got i. So I was expecting it anyway.

How did you feel?

Oh, that day, I don’t know, when she told me, though I knew she was going to say that, but when she actually said it in her mouth it was, I cried because it was so painful, because I kind of like I blamed myself for him having it. So, I don’t know, I was just crying and she told me, Oh, it’s all right And she was explaining to me. And I was telling her, Oh, people say, in my country people say this And then she was like, No, it depends. If you give the baby the medicine and you keep him warm and you’re just looking after him, he won’t, none of these things will happen. And theres people that never went through the crises. And so it really depends how you’re looking after him So she was like giving me advice.

And from that day then I knew. And then there was other people. She was telling me, Theres other people that have got it and they’ve got kids and stuff. So it’s not as bad as it seems. But it could be bad if you don’t look after the baby So I was like, Okay. Really, it’s really up to me now to do my best and hes always well, and not get sick all the time