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Interview 21

Age at interview: 31
Brief Outline: Both partners knew they were beta thalassaemia carriers. Second child born with beta thalassaemia major. Mother has had CVS in two pregnancies since, and would terminate the pregnancy if the baby was affected. Video and audio clips read by an actor and recorded in Mirpuri.
Background: Married housewife, four children aged 10, 9, 8 and 2. Husband unemployed. Ethnic background/nationality' Pakistani.

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Both partners knew they were beta thalassaemia carriers. Her husband's parents also knew they were both carriers; they had had six children and none of them had inherited beta thalassaemia major. As a result her husband and her in-laws all felt antenatal diagnosis was not necessary. Their first child was found to be a carrier, but during the mother's second pregnancy her mother-in-law also gave birth to another baby, and this time the baby had beta thalassaemia major. The woman and her husband decided they would have antenatal diagnosis and discovered their unborn baby also had the condition. She was already four and a half months pregnant by this stage, and felt it was too late for her to have a termination. 

However, since then she has had CVS in two more pregnancies and would terminate another time if she found the baby had beta thalassaemia major. Life is very hard for her second son who has the condition, and she would not want another child to go through the same thing. She especially wants other Muslim mothers to know that many Islamic scholars teach that termination for life-threatening conditions is permitted up to 120 days of pregnancy, at which point the soul enters the unborn baby ['ensoulment']. After that termination is forbidden in Islam. She therefore thinks it is important that women do a pregnancy test as soon as possible so they can make sure they have antenatal diagnostic tests early in pregnancy. 

She also thinks it is important that people should be encouraged to have screening before marriage and make sure if they are a carrier that they do not marry another carrier. It would be better if families did not arrange marriages and make this public while their children are still very young, as this makes it difficult to cancel the arrangement later on if both partners turn out to be carriers. 

 

She found out she was a beta thalassaemia carrier when she came to the UK from Pakistan to join...

She found out she was a beta thalassaemia carrier when she came to the UK from Pakistan to join...

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

I came from Pakistan in January 1995 and I had a check-up here. You know when a new person comes here, they take blood and do a check-up. They did a check-up, took blood, and they knew about my husband already that he's a thalassaemia carrier. I didn't know, because in Pakistan they don't tell you whether you're a carrier, they don't tell you anything. Then when I came here, they did it and said you're a carrier, and my husband said that - and my uncle, he too said that when [my husband] was 16 years old, they invited him, I think it was a doctor or someone. They said don't marry him to a carrier, because the children could have major. If both husband and wife are carriers, then they can have children with major. 

 

Women should check if they are pregnant as soon as possible, so they can have screening and...

Women should check if they are pregnant as soon as possible, so they can have screening and...

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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.

 

Parents should not arrange marriages when the couple are still children, because it makes it...

Parents should not arrange marriages when the couple are still children, because it makes it...

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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. 

 

After seeing how hard life with beta thalassaemia major is for her son, she wanted diagnostic...

After seeing how hard life with beta thalassaemia major is for her son, she wanted diagnostic...

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

And it is a hard job, and if the individual knows that a girl and boy are carriers, firstly they should not get married. Secondly, if they get married, then they should definitely get checked in [city]. There are placed to get checked, Mashallah to find out if the child is major. Nothing's happened in eleven weeks. Then in my next pregnancy, I had checking. I had the test at eleven weeks, for my third child. Then they said that he was a carrier, not major. Then for my youngest, she's two and a half, I had checking that time round. I had the check within eleven weeks, and Mashallah she is absolutely normal, not even a carrier. 

And now like this, it's luck. I mean some people's children could be well. It's not important that carriers - the girl can be a carrier even when you, the child marries from outside [the family]. Check the blood. To avoid your headache, blood should be checked. In the future… I have two children, three boys. One is major, the other two are carriers. I'm not bothered about the girl, she's normal, she can marry any boy. For the boys I will try the best from my heart that the girls are normal, because it is suffering to have to go to [city] to get checked, and then you are worried. If they want to take on that headache, then that's their business.

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…

…I would have had a miscarriage [termination], because there are so many headaches. Allah… 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 miscarriage [termination], because it's only blood, there's nothing in eleven weeks. I mean there's 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, “Do you want a miscarriage [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'. 

The mother in this interview used the English word 'miscarriage'.

 

She has heard Islamic religious leaders explain the soul enters the unborn baby around four...

She has heard Islamic religious leaders explain the soul enters the unborn baby around four...

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

Allah forbid, if this was to happen to you again, if you're twenty weeks pregnant and you find out late, what would you do?

I have not thought out that I wouldn't let it go so far. If it does, I mean I have enough children, but even if it does happen, I think that would be too late. Because Muslims are not permitted, because the child has a life then [soul has entered]. The baby moves in the mother's tummy at about four, four and a half months. And in my calculations, I don't think anyone should do that. Don't let it go to that limit anyway. Eleven weeks is really nothing at all, I mean, it's just blood, doesn't have a life. The baby doesn't move in the mother's tummy. A baby of four, four and a half months moves its arms and legs. The mother can feel it. That's too late. 

You said that it's not permitted in Islam. Did you get any information from anywhere about Islam?

Yes.

How?

The individuals are educated. They said that it is not a sin within eleven weeks. 

Where did you find out from?

We found out, I mean, they're educated people. Now they talk about it on Radio Ramadan, I sometimes contact them, ask them. The Molvies [priests] sit on Radio Ramadan when it opens and they said that Mashallah it doesn't say in any book. Yes, if it's more than this many weeks, then it is not permitted. But it is no sin at this many weeks. 

More than how many weeks?

They said over three months or over four months, but it's not a sin under three months or up to three months. It's no sin, I mean, it's not alive. The soul enters at about four months.

Footnote' some Islamic scholars teach that termination for life-threatening conditions is permitted up to 120 days of pregnancy, at which point the soul enters the unborn baby ['ensoulment']. After that it is forbidden. 

 

She had CVS in her second pregnancy after her mother-in-law had a baby with beta thalassaemia...

She had CVS in her second pregnancy after her mother-in-law had a baby with beta thalassaemia...

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

I also became pregnant very soon, and then she said that, 'You are both carriers and you will have to get the baby checked.' Then my husband said that both my mother and father-in-law were both carriers, they Mashallah had six well children. My husband said, 'Don't worry, leave it, we don't want to have it checked.' First he said we will, then he said, 'We won't get checked because all us brothers and sisters are well, and whatever Allah wants'. Then we didn't have checking, for my eldest son. Mashallah he's ten years old, we didn't have him checked. After he was born, he gradually became pale, so they checked him and said, 'He's not major, he's a carrier.' 

Then my mother-in-law, even though she was trying to keep control, she became pregnant after a long time. Her children were all grown up, the youngest was about ten, eleven years old. After that, she didn't know and became pregnant and she had a son, my young brother-in-law. He was major. He is approximately my son's peer. Then he was major, and we were scared.

The second time round [in pregnancy] I had it done, but I was late, because it was about four and a half months. Then they said, I didn't even know I was pregnant. When I found out, I had checks, went to [the city], had everything done. They said that, 'Your baby is major.' Then [the counsellor] came to our house and said, 'We're not forcing you, don't force anybody, it's your choice. You can't have a miscarriage [termination] now, it will be like giving birth to the baby.' That scared us and we said, 'Obviously that's like murder, and it's our own fault.' I should have had checks at eleven weeks, I should have found out earlier. Now everything's formed. Every one knows you're pregnant, wherever you go. So we didn't go, we didn't have it done. Then he was born. 

Footnote' some Islamic scholars teach that termination for life-threatening conditions is permitted up to 120 days of pregnancy, at which point the soul enters the unborn baby ['ensoulment']. After that it is forbidden. 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.

 

Since her son was three months old he has had blood transfusions every three weeks and chelation...

Since her son was three months old he has had blood transfusions every three weeks and chelation...

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

At seven months, it was to hospitals every day. They said he doesn't have this, or this. He wasn't even three months when he started having blood transfusions. He still has it, every three weeks. Other people's children have it after about four weeks, he has it every three weeks. They give him tablets for his bones.

What do they give him? 

The hospital give him tablets, I mean his bones are not growing properly. He takes four tablets, zinc. But it's a headache, you have to keep giving them. The poor thing has four tablets a day and has an injection for eight hours, Desferal. Some children have it seven nights a week. Thank God he doesn't have to have it seven days, he has it on three days a week. And then he has to have a Vitamin C tablet, have the machine detached, get up and go to school, he's tired. Now it's been about two months that he gets an infection in his leg. There is suffering for people everyday, when I think… it never happened before, why has it happened? He had a check-up and they just said that 'he has a high chance of infection'.

He gets the infection because there something different about his blood?

Yes. I don't know how he's got this high infection in his blood. He'd never had an infection like this. I don't know where this infection came from. I can only think that the infection is in the blood that they give to him, or Allah knows, I don't know, because he's never had like flu or infections like this. Then the infections come through the blood somewhere. His legs sometimes get bruised. I've been giving him antibiotics, now Allah help him get better.

Footnote' doctors will advise how often a person with beta thalassaemia major needs blood transfusions and chelation thereapy to remove excess iron (Desferral/desferrioxamine). Most people have chelation therapy on 5 nights a week. People are often prescribed folic acid, vitamin C and other tablets to help keep them healthy. Antibiotics may be needed to treat infections, which can come from a variety of sources, including the blood transfusion itself.

 

She knew a boy locally with beta thalassaemia major who postponed his blood transfusion for a...

She knew a boy locally with beta thalassaemia major who postponed his blood transfusion for a...

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

My message is just that, whoever they explain to, I mean if they have to explain to somebody, that it's nothing to have a miscarriage [termination] within eleven weeks. Rather than every day… There was a child [called name], you may have heard about him, Mashallah, he was nineteen years old. Now, I mean, Allah has written life and death. Death doesn't forget you. What happened with him was that he was going for a blood transfusion, and his mother said, 'Go for blood' - he'd grown up now and he used to get it himself - and his mother said, 'Go get a blood transfusion' and he said, 'Mummy, it's my birthday this week, I'm not going, I mean for (a few unclear words), next week.' 

He went for a check next week, and parked his car outside the [hospital] and his blood was a lot lower, much lower, because he needed blood transfusions after four weeks, and it was five weeks. Then he shut his car door. When he got out, he felt dizzy and fell there. They took him in and he died. Okay, that's how much life he had, but his mother won't forget him. It will never leave his mother's head that 'My child was late by one week.' Rather than this stress from thinking, it is better, there's nothing [wrong] with having a miscarriage [termination] within eleven weeks. It's nothing.

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.

 

Professional learning: She explains the teaching of some Islamic scholars about the possibility...

Professional learning: She explains the teaching of some Islamic scholars about the possibility...

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

Allah forbid, if this was to happen to you again, if you're twenty weeks pregnant and you find out late, what would you do?

I have not thought out that I wouldn't let it go so far. If it does, I mean I have enough children, but even if it does happen, I think that would be too late. Because Muslims are not permitted, because the child has a life then [soul has entered]. The baby moves in the mother's tummy at about four, four and a half months. And in my calculations, I don't think anyone should do that. Don't let it go to that limit anyway. Eleven weeks is really nothing at all, I mean, it's just blood, doesn't have a life. The baby doesn't move in the mother's tummy. A baby of four, four and a half months moves its arms and legs. The mother can feel it. That's too late. 

You said that it's not permitted in Islam. Did you get any information from anywhere about Islam?

Yes.

How?

The individuals are educated. They said that it is not a sin within eleven weeks. 

Where did you find out from?

We found out, I mean, they're educated people. Now they talk about it on Radio Ramadan, I sometimes contact them, ask them. The Molvies [priests] sit on Radio Ramadan when it opens and they said that Mashallah it doesn't say in any book. Yes, if it's more than this many weeks, then it is not permitted. But it is no sin at this many weeks. 

More than how many weeks?

They said over three months or over four months, but it's not a sin under three months or up to three months. It's no sin, I mean, it's not alive. The soul enters at about four months.

Footnote' some Islamic scholars teach that termination for life-threatening conditions is permitted up to 120 days of pregnancy, at which point the soul enters the unborn baby ['ensoulment']. After that it is forbidden. 

 

Professional learning: She wants diagnostic tests as early as possible in pregnancy, so she could...

Professional learning: She wants diagnostic tests as early as possible in pregnancy, so she could...

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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…

…I would have had a termination, because there are so many headaches. Allah… 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, there's nothing in eleven weeks. I mean there's 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, “Do 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.

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