Screening for sickle cell and beta thalassaemia

English transcription, video and audio clips in Urdu, read by an actor.

You mentioned marriage again, that both people should be tested before marriage…?

Yes. My mother-in-law said so. She [mother-in-law] said that she [daughter] has thalassaemia [carrier], and she says to me that whenever you arrange her marriage, it will be important to get the boy tested as well. Otherwise there will be problems for the girl. Children are born following such difficulties, and such pain, and if the child dies after birth, then the mother will suffer more than the child. The mother will suffer.

So she is concerned about her granddaughter?

Yes.

But how would this happen? Say for example, if your daughter was an adult now, right, and if, you are arranging her marriage with your brother's son, for example - sorry, I don't know if your brother has a son…?

…yes, he has a son too.

For example, if your brother ask for your daughter, for his son, then will you be able to say that 'I want to have your son tested', and why? How would you do this?

I will say to him that I want to have both of them tested, 'My daughter has thalassaemia [carrier]. It's a condition, not a dangerous one where an individual would die or something, nothing like that, just a minor condition, and we want to have the boy tested to see if he has it or not.' If my brother says, 'Yes, I'll have him tested', then that's okay. If he has thalassaemia, then I would say, 'No', I would not be able to arrange my daughter's marriage. 

Don't you think that they will think that your daughter has some disease?

Yes, he will think, will say, 'I hope my son does not have this condition. It's an arranged marriage from my sister, she wants to give her daughter to him, my son. God forbid, I hope he doesn't have this condition.' Then the both of us, brother and sister, could arrange the marriage. Yes. 

But is there any fear in your mind, that you don't want them to think about what condition it is that your daughter has?

I will explain to them, so there is nothing to worry about. I will say that I am alive too.

Yes, of course.

My daughter will live too. We both have thalassaemia. I am fine, wandering around, and now my husband doesn't have it and my children will be safe. If I had it and my husband had it, then my children would not have survived. 

Footnote' This woman and her daughter are carriers of beta thalassaemia. It is important to distinguish between being a carrier, and having the condition beta thalassaemia major. People can only inherit the condition if both their parents are carriers. 

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

And your husband knew before marriage that he is a carrier?

He is a carrier.

Everything was explained to him in childhood that 'If you marry, then make sure that the girl is not'…

… that she is normal. 

Did you ask him later why he did not check?

No, no. The thing with him was that he was young. He was seventeen when we married. His mother took him to Pakistan and our marriage was arranged long before that. But this should not happen, because you don't know. I was young and my uncle [father-in-law] said that we want this girl [for our daughter-in-law], that's what happens in Pakistan. And then when they went for the wedding, then who would have let them check blood? They would have said, 'You have her hand in marriage and you want to pull out.' Some people say that 'Your son won't agree, that's why you're doing this. That's why they kept quiet.' They learned about my blood when I came here. And no-one in Pakistan would believe you either.

About what? 

About carriers. They do now, but they didn't then. It's been eleven years since my wedding.

Why do you think they don't believe this? 

I say that they should. You shouldn't take on this headache. It is the mother and father's responsibility to take care of their children, raise them. After that, it is up to the children for their own life. If the children themselves say, if my carrier son says, 'I don't want to marry a carrier girl', don't do it, because then it is their life. They have to look after their own life. 

You said something very good, that if they said that the girl should be tested when they went to Pakistan, and you would have said, maybe your family would have said that the boy is pulling out, or they don't want to marry…

…yes, that's what happens in families.

Yes, I completely understand this. But then…?

The best thing is that marriage should not be arranged at a young age [in childhood]. No one should know whether anyone has asked for this girl, or who will marry her. Yes, when she is older, take your son, and even then the girl's blood should have been tested, if you know that the boy is a carrier then tell him which girls are normal and 'Marry which ever of these that you want to', that's better.

But you said, like I was saying about your husband, that his asking would be like…?

…But our marriage was already agreed. I'm saying that it should not be agreed. It should not be agreed at a young age. Nobody should know. People can go to visit Pakistan for no reason. Now just about all our village knew that my marriage had been arranged from a young age, that this girl's [hand in marriage has] been given there. To tell you the truth, my mother used to tell people too, that we've given her to that boy. When I grew up, and people asked [for my hand in marriage], she'd say I've given her to such and such. You shouldn't do that. There are girls inside the family and outside, and no-one should know that this girl has been given to that boy, or this boy will marry from there. 

Video and audio clips read by an actor.

So what did you think about when you chose your partner then? How did thalassaemia fit into all of that?

It didn't actually. I didn't… I had an arranged marriage. You know, you don't say you've got a disease and “We want to check you, you know, your son, if he's got it as well.” You just went and got married. And when it came to kids - and you automatically being Asian now you get tested for it. And I already knew I was a beta thalassaemia carrier. And I had told my husband about it, so he got himself tested when we had our first son. And because he didn't have it, it wasn't really an issue. But I wasn't, you know, when I was looking for a partner, it wasn't a major topic at that time to think, “Oh, I've got to screen him before I actually get married to him.” I didn't go that far because it was based on, “Well, there's a probability.” 

Video and audio clips read by an actor.

And when you did tell your husband's family, was there any kind of comeback from that, or the feeling that, “We would have liked to know before”? Or was it not a problem?

I don't know. I think they were quite surprised when they realised that I was a beta thalassaemia carrier. And I think my parents were just always, my mum was very much like, “Oh, well, don't say anything.” And they feel that it's like a stigma that there's something bad. You've got something. You know, there's something wrong with you. And I was like, “Mother!” you know. But yeah, I think our parents do, and I think my in-laws possibly did. But then my sister-in-law's got it. You know, my husband's brother's wife, she's got it. So she had to get tested as well, which my mother-in-law didn't know. So when the counsellor came to see me and she had this talk and my mother-in-law and father-in-law were there, and then afterwards I says, “Oh yeah, well, so-and-so's got it.” And she said, “No she hasn't.” I said, “Yes she has.” Because his brother told me that she had got tested. And so she was quite, “Oh. Right.” [laugh].

So I don't know, I suppose, yeah, they do think, you know, they're coming into their family and they've given them something [laugh]. And they probably think like that. And like our parents are like, “Oh, we don't say anything.” Whereas we think, “Well, it's no big deal.” You know, that's part of you and it's not as if it's going to - it would only be a problem if he had it. So he hasn't got it. It's not a problem. And when our children get old and decide to have kids, that's up to them what decisions they make and how they go about it. You know, you can't tell them what to do, just like if our parents told us what to do regarding this, we would just think, “Well, no. It's our choice.”

Video and audio clips read by an actor.

Abortion for me is just like a big sin. So I couldn't do it. But I think if I knew, if there's 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.