Screening for sickle cell and beta thalassaemia

Some people say they don't want to have screening because they don't want to know if there's a problem with their baby. Either because they know they would never do anything about it, like you're saying, or because they don't want the anxiety during pregnancy, of knowing that something may be wrong. Does that worry you, that idea that you've then got the rest of the pregnancy to worry?

Well, people have different, you know, opinions about certain things. Well it's a very difficult question. But I don't, basically, I think - I'm still not worried, basically, about the pregnancy. I'm not. Because - it's very difficult, basically, it is. On the whole it doesn't really affect me, or affect us in any way. It doesn't. Because at the end of the day whether you take the screening or not, whatever is there is there. So I think taking it is better. It gives you that kind of, an idea of what, what might happen to the baby, and then you prepare for that, rather than - you know, if, if you had actually taken it, they might, they could have, maybe there are some diseases or some sicknesses they could have actually, you know, do something about it. 

So I think it's a good idea, taking it before, before birth, rather than after birth, because maybe it might be too late taking it after birth. So I - but that's what I'm saying. People are all so different. They might, some people obviously go through the anxiety as you've just said. So they think they cannot take it, so they have to do it after birth. So that kind of - some people are different. But to me, I think to take it before birth is fine. It's a good idea.
 

Video and audio clips read by an actor.

It's good for you to still have the screening, just to be able to be informed. I mean, at the end of the day it's still people's choice whether they want to or not, but to me I would have said it's good to know. To me it was good for me to know, anyway. Even though I decided to go ahead anyway, it was good for me to get myself prepared to start thinking about, “Okay, what does the future hold?” you know. 

And if people have choices what to do- I'm a stickler for choices. I'm for choices. I would have said that I would encourage people to have this screening just to be able to - especially if you've got sickle cell - just to be able to be prepared with what will come. And maybe make a decision. I mean, my decision was that I didn't want to go ahead with a termination. But if someone said they wanted to go ahead with it, if I knew someone who said they wanted to go ahead with it, I will tell them my experience, but I wouldn't say, “Stop.” I wouldn't say, “Oh well, that's the wrong thing to do.” Because at the end of the day, it's the way you feel, not what someone will tell you. It's the way you feel and maybe you talk it through with your partner, your husband.

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. 

Video and audio clips read by an actor. 

Are you glad that you found out, or do you sometimes wish you hadn't?

No, I'm really glad that I did know. And I'm really glad I found out before I was married. Because I think it was you know, equal responsibility then, really, and the burden wasn't on me, that I knew and I didn't tell him. Because it's something that would have affected us both, really, afterwards. 

OK. Would you think other parents should go for screening?

I would advise them to go for the screening, really. Simply because I have seen the impact thalassaemia can have on families themselves, really. I know I don't have it myself, but one of our close friends did have it and the impact - and the impact it's still having on their family as well - is quite large. And it's not a small thing, and it's something that affects them throughout their lives. And, you know, thalassaemia major, you know, I think it is a major condition, really, that people should really think about before they have children and should definitely have screening, really.

Video and audio clips read by an actor.

I suppose it's good to have that knowledge and you know what you're getting yourself into. And so if you've got the knowledge, you can make a definite decision for yourself. I think if you don't know, then you sometimes get into that thing where it's too late to make a decision. And so whereas if you know, you know with your eyes open, “This is what it entails, and this is what's going to happen if you do go ahead with it.” And if you know the worst case scenario, then you can judge how you want to go about doing it. 

So I think it's very important that this information's there, and it is going out to a lot of people, and they are picking up on it. And I think from when I got tested and from when I had a phone call from local Health Centre, it was quite quick. You know, it was quite early on in pregnancy that they picked it up, maybe before the first twelve week, fifteen week scan. So they are trying, they are trying to get to those people quite quickly and make you aware, to make that right decision. So that's good. And it's helpful. 

English translation, video and audio clips in Mirpuri, read by an actor.

If we could put the clock back for you, if you went back in time, what would you do differently?

I wouldn't do it differently, because I am a Muslim and I am afraid. My heart could not agree to do this when I'm over four or four and a half months. Yes, the individual's life is difficult. I cannot think that I could go over. It just cannot be that I would let it go over three months [to have prenatal diagnosis], because there are cures. You could go to the clinic. You could get things from Morrisons [supermarket] to check yourself, to find out whether you are pregnant or not. If you spend nine or ten points, you get something too. Then it tells you whether you are pregnant or not. It's not hard.

So you mean that you would have testing sooner?

Yes, I cannot think about not testing within six, seven weeks. I can do it.

You can do it yourself.

Yes. Any person can do it. It's easy. Now there are clinics there on Tuesday and on Friday. You can go any day. It takes a little time and then they tell you whether you are pregnant or not.

If there is a couple like you where both husband and wife are carriers, and if they are thinking about what to do because they are both carriers, 'Should we have testing or not? Should we have termination or not if the baby has thalassaemia?', then what would your message be for them?

As far as my message goes, I would say, 'Have it. Have it checked. I mean have it checked within eleven weeks, and yes, if your child is major, then have a miscarriage [termination]. Nothing will happen. Eleven weeks is nothing, I mean, the soul has not entered the child yet, so it's not hard.'

Why would you recommend termination? 

Because if your child is Major, then it will be very, very hard work for you. I mean, it becomes hard. If he is major, he has to have blood, he could get something else. He could get any other disease. That's why.

Footnote - The mother in this interview used the English word 'miscarriage'. However, it was clear from the interview that she was using this term to mean an early surgical termination. She distinguished between this and termination later in pregnancy by induced labour, which would not have been acceptable to her.

Did either of you talk to family members while you were waiting for the results to --

Father - All the time, yeah, she'd be phoning Vietnam all the time, to her sisters and her mother. And I'd be talking to my friends basically. Again talking to people in Vietnam they just think, they just never, they can't visualise it, you know? It's just totally unknown to them. So I think in south-east Asia this sort of condition is, it's not widely known, do you know what I mean? And so over there it's just, it's a bit strange to have this sort of problem. But I think the problem we had talking to people as well is that too much knowledge is quite - you know what I mean? And I think there's probably a couple like us in Vietnam somewhere, who probably have the condition but have just gone ahead with it and had a healthy baby and just never realised there was a potential risk, I think. So all these tests bring out all these new scenarios, you know, and it put pressure on. Whereas sometimes not knowing it, just going ahead with it is , might be good, you know what I mean?

Yes, I mean I suppose that's the other point of view, isn't it? That actually it might be better never to know?

Father - Yeah, and just, just --

Do you, do you ever think --

Father - Well, for my part I don't think so, because at the end of the day, you know, if the baby come out not well then, you know, then there's not - what's the point? But sometimes, you know, it may be easier. No, not from our perspective. From our perspective maybe it's better to know, but in a way you wish, you know, you never knew and, you know, you'd just gone ahead with it, and you just take the chance basically. But I think I prefer to know. But now you know it, you can't go backwards sort of thing.