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 hes 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.

Video and audio clips read by an actor.

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?

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 hes 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.

Video and audio clips read by an actor, translated from Mirpuri.

You had testing for the younger two boys, and the girl…

I had testing for three of them, just not for the eldest son. And the second one who already has major, I was too late in getting checked that time round, but for two of them, I went for checks at the right time, within eleven weeks.

When you had testing for these two, if you would have found out that they had thalassaemia major…

‚ĶI would have had a termination, because there are so many headaches. Allah‚Ķ I’ve been trying my best, hoping to Allah that this does not happen, but it if does, then I would have it done [termination].

Why was that?

Because it is hard. I have one and I take him to hospital everyday, put machines on him. There would be too much suffering for me if I had two. So I would have done it, would have had a termination, because it’s only blood, theres nothing in eleven weeks. I mean theres nothing to fear.

You said that you were too late with your son who has thalassaemia, how many weeks pregnant were you at that time? Did you say four months?

I didn’t realise. I was weak and I thought that I’m just not having periods. Then when they didn’t happen in the next month, then I went the doctor and told him. Then I was a bit late in getting contacting the counsellor. Then the counsellor took two weeks to send me the results. Then she came to our house and said, ‚ÄúDo you want a termination or not? It will be like giving birth to a baby. They give you an injection, you get ill and then it’s like giving birth to the baby, it will be like that. I was scared then.

Footnote up to around 13-14 weeks of pregnancy, a termination is normally performed as a surgical operation (dilatation and evacuation or D&E) under a general anaesthetic. After this point, the termination would normally happen by inducing labour. This is why the counsellor told the mother it would be ‘like giving birth.

In the original Mirpuri interview, the mother used the word ‘miscarriage rather than ‘termination. However, it was clear from the interview that she was using the term to mean an early surgical termination, and distinguished between this and termination by induced labour, which would not have been acceptable to her.

Do you wish now that actually you’d been able to find this out before getting married?

Father’Yeah, in a way we wish, but in a way we can’t really, because [wife]’s come from Vietnam. So, you know, she wouldn’t have this, in Vietnam they wouldn’t have this kind of facility to pick up, pick up the blood test, really. And yeah, in a way it’s better to know it so that, you know, in 10 weeks or as quick, soon as possible we can sort of find out, you know. It’s just the bit that the time span is while shes carrying the baby, really. If wed known a bit earlier we could do things a lot earlier. But I think that’s the only thing we wish, that it was a bit earlier, you know, it was known earlier, rather than 20 weeks in the process.

I wonder why it was that late? At what stage was the first blood test?

Father’It, I think it was just a routine blood test really, do you know? Routine. And I just had a letter come through. It was, ‘Could you come and make an appointment?’ sort of thing. And, and that was done and then we came in and then it was another two weeks until we got the results, yeah. And I’ll tell you what the worst thing about that was, that you know, the first test, the first test when I got result and that, they said that if we got a positive result then if it’s – how shall I put this? ‘If it’s bad results then you wouldn’t hear us in-‘ Let me get this right.

[discussion in Vietnamese]

Father’Ah. Shes saying that if she – basically, the doctor who did my test saying, ‘In the first week, if we don’t call you, then the result is good. Yeah? So every day that passed by, you know, we were just getting happier and happier, yeah? So we just thought, you know, after one week, you know, ‘It must be a good result. That’s why they haven’t called us, because, you know… And then after that, you know, then two weeks time, she called us to say, you know, ‘Sorry about the delay’ or something like that, you know. So it was that really, you know. It was, I think the thing is that you have to do it one week, week – I know it’s time pressure – but the thing is you need to know as soon as possible, because every day that sort of delay it just, it kills you, you know? You just, you know, you just think of the implication all the time. You just can’t stop thinking. Yeah, so – so things like that, you know, I think in future for any couple you want it, ‘This week you’re going to get this result this day; this day; this day’ rather than sort of – because by that time every day I was looking at my mobile and every time it rings it could be the result, do you know? So it was like nervous the whole month basically. And it was that really. That’s the heavy part, really, because you–

Was that delay in the results anything to do with it being the E variant rather than the beta, or they just didn’t explain why it was’?

Father’No, they said something about, ‘Theres a lot of work on’ or something like that. And I think they said it – I think the worst part was that they said it was going to be two weeks, but they said if there might be, if it’s a good result then they wouldn’t call us – no, if it’s a bad result they would call us in the first week. And therefore the longer that it goes on you think, ‘Oh, it must be a good result because they haven’t called us. But even two weeks seemed to be a long time, you know. I think, you know, we need to know more quicker really for something like that, because things go through your head all the time, and you need to know and act on it, rather tha

Did it ever cross your mind not to have screening?

No, it didn’t. It just – because in the letter, when they wrote to her, you know, they actually attached a form for me to take my blood test, well in advance, before we come for the counselling. So I took it, but for some reason it still hasn’t – actually the test, the result still hasn’t arrived. It hasn’t come, so – by then. So the appointment date reached and we went, whilst my result wasn’t still, you know, out. So we went for the counselling, you know, without still knowing my result, anyway.

That must have made it quite difficult to have a proper discussion about what you were going to do next?

Yeah, you are right, because now I don’t know what, whether I’m a carrier or not. So it’s still very, you know, difficult to sort of say things that I would have said if I know mine, whether I’m a carrier or not, so it’s kind of a balanced decision now, to say this or that. I cannot really say some questions you might ask me.

So you went to the – or made the appointment, not feeling particularly anxious. Do you feel more anxious now?

Yeah, a little bit, because now I don’t have my results so it’s quite, you know, I’m in a position where I still don’t know whether I am a carrier or not, and now I know if I’m a carrier then the chances of my child, you know, having it is about twenty or twenty-five per cent or so, so it’s still quite balanced by it. I’m hoping that I’ll, you know, I’ll prove negative to it, so that the child will be sort of free, from, from the disorder. Or if – I’m not quite sure whether the child can be a carrier – if my wife is a carrier. Yeah, the child can be, but not the disorder.

So when you got that letter, what were your feelings when it came through the letter box?

Well, as I said, I was terrified, I didn’t know what it was all about. And you know I just wanted to, you know, get to that appointment and see what it was all about, to be quite honest, because I was a bit worried about that. Because obviously, you know, it’s when you’re pregnant you don’t know sort of what to do, really, with things like that.

And did you talk about the result with your partner before you went to that appointment, or did you not know at that point that he was going to be involved?

No, I didn’t.

They did say on the letter about having your partner come along, so he knew he had to come along to that. So we both went along together to the appointment, to see the lady, and she went through everything and explained all about the red and white blood cells and what would happen if baby got it, and you know, what the options were, really. And then they took my partner’s blood, and then we just had to wait, really.

What was going through your mind in that waiting period? Were you thinking what you’d do if the result came back positive?

Yeah, if it had come back positive I would have definitely continued with the pregnancy, definitely, and just dealt with it, really.

What made you think that?

Because I felt it had gone too far, really. You know, when you’re seeing baby’s heartbeat on the screen and things like that, you can’t sort of, you know get rid of that really.