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Interview 22

Age at interview: 20
Brief Outline: Discovered she was a beta thalassaemia carrier during her first pregnancy. Her husband was tested and is not a carrier. Their first daughter is a carrier. Video and audio clips read by an actor recorded in Urdu.
Background: Housewife, married with two children aged 3 and 5 months. Ethnic background/nationality' Pakistani.

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This mother discovered she was a beta thalassaemia carrier when she was screened during her first pregnancy. At first she was shocked, but was quickly reassured that being a carrier does not mean you have a serious illness. She had heard about it in Pakistan and knew that people who are beta thalassaemia carriers have some protection against malaria. Her husband was also worried at first. He agreed it was important to be tested and they were relieved to learn he was not a carrier. Their first daughter was tested when she was about three, because she was looking pale and had lost her appetite. She was also found to be a beta thalassaemia carrier. The mother feels it is important that she and her daughter should eat a healthy diet. The couple's second baby has not been tested yet, but they will have her tested soon, as they would like to know if she is a carrier.

If the couple had both been carriers, they would probably not have had diagnostic tests in pregnancy, and as Muslims they felt termination would have been a sin. They would have accepted Allah's will if they had been sent a child affected by beta thalassaemia major. However, when their own daughters grow up, they want to make sure their future husbands are screened before they arrange their marriages. If it can be avoided, they would not want their girls to have the distress of having a seriously ill child. They believe it is something to talk about openly with the other families concerned.

 

She was already pregnant and was screened on arrival to the UK. Her midwife confirmed she was a...

She was already pregnant and was screened on arrival to the UK. Her midwife confirmed she was a...

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

When I first came here, they asked me to have blood tests. They tested my urine and they said you have thalassaemia [a carrier]. At first, I was in shock. I thought 'this is some serious disease' and then they called me and they said this is not big serious condition, just that, it's a minor condition. There is a lot of this in Pakistan, you know, like germs, that sort of condition. I can't remember what it's called. I know I'd always had that condition. They call this thalassaemia, and you're okay. Ah, yes, it's malaria. I mean, you won't get malaria. You'll be safe from this malaria because of thalassaemia. And that's it. That's what they told me about it. At first, I was confused, but then I was okay. My daughter has thalassaemia [carrier] as well, my elder daughter. We both have the same.

They don't pay attention to these things there [in Pakistan]. In Pakistan, I had my blood tested, I had my urine tested as well, when I was pregnant, and they said that your blood is okay, they didn't bother. They tested my blood when I came here, and they found out that I have thalassaemia, and I went there about five, six times. I went at the time of my daughter and now as well, in pregnancy, I went about two or three times. They told me, said it was a minor condition, nothing so major. Don't take it as a serious condition. 

Footnotes' Being a beta thalassaemia carrier is believed to offer some resistance to malaria. Thalassaemia is common in those parts of the world where malaria is found. Carrier status is always checked by a blood test. Urine tests monitor other aspects of the mother's health during pregnancy.

 

They were worried at first when they discovered she was a beta thalassaemia carrier, but it was a...

They were worried at first when they discovered she was a beta thalassaemia carrier, but it was a...

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

If we both had it, if my husband had it like me, then our child would have been in danger. There's a danger that the child would die. She could have died when she was a bit older. So one of us has it. My husband does not, he had a test as well. When he had his blood test, the said that, 'You don't have it', and because he doesn't have it, the children won't have it, the condition. There isn't a problem. 

So when you found out that you had thalassaemia [were a carrier], you said that you were worried. What did your husband say? I mean, what did you say to each other?

About thalassaemia?

Yes.

He didn't say anything, he was shocked as well as to 'What condition is this?' So they said that it's no big issue. No great problem. It's just a minor condition. There are self-restraints for this as well, like eating vegetables, fruits. These foods should be eaten more. I have less blood too, so they have given me tablets and said, 'Eat these tablets'.

You have less blood. Right. And what did your husband say when they said that he should be tested?

He said, 'Okay, I'll get tested. There's no problem in that.' I explained to him that 'There could be a problem for just the children, take time for yourself and go have a blood test. I would then be reassured in one way, you'd also be reassured.' I said, 'If both of us don't have it, then there isn't a problem.' I was very worried, what if we both had it? 

Had what?

Thalassaemia. 

If you had it…?

Yes, it would have been more of a problem for the child. Thank God, just one of my daughters has it [is a carrier].

Footnote' A few people who are beta thalassaemia carriers find they get tired and anaemic sometimes. Carriers of beta thalassaemia need a special blood test (serum iron or serum ferritin test) to diagnose iron deficiency. You should take iron medicines only if this test shows you are short of iron. 

 

When her daughter grows up, the family will ask for her future marriage partner to be screened to...

When her daughter grows up, the family will ask for her future marriage partner to be screened to...

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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. 

 

Professional learning: As a Muslim, she feels screening can be useful, but termination is...

Professional learning: As a Muslim, she feels screening can be useful, but termination is...

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

I think if you could miscarry, if there is a danger to the child, then I should not have the test. I should have the testing done after birth. If there is a concern about the child dying or a miscarriage, then this is the greatest sin, is the formed child is miscarried. We consider it a great sin.

Right, I mean if you find out that this child would have this condition, in which he would have to have blood and could die in childhood, do you think that such a child should be terminated or not.

If you find out, we cannot terminate. It's the greatest sin, and God forbid, if it is born dead, then there is nothing that you can do. If it is born well, then you could have his blood tested and tell the doctor that he has this problem, and they themselves can think and say what should or shouldn't be done.

I wanted to know that why you had your husband tested. Why did you want to have it done? 

This was for my own reassurance. God forbid if he had thalassaemia as well, and if I had it, then there would have been a problem for the child because of us both. There would have been a problem, like as the child gets older and older, and in the end he dies, then that's because of us. We should both have our blood and urine tested, and then we should think whether we want children or not.

Right. But I don't quite understand here, that you said that you had him tested, right, for your reassurance, but at some stage, you must have thought about what you would do if he also had thalassaemia?

What would I do? I would just pray to Allah. What else could we do? And whatever is written in our fate will happen.

Footnote' Screening for sickle cell and beta thalassaemia is performed using blood samples. Urine samples taken during pregnancy are to check other aspects of the health of the mother and baby.

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