Interview 24

Age at interview: 32

Brief Outline:

Both parents are beta thalassaemia carriers. Had CVS in first pregnancy. Baby diagnosed with beta thalassaemia major and they continued the pregnancy. In three pregnancies since they chose not to have antenatal diagnosis and none of the children is affected. Some audio clips in Mirpuri. Sister-in-law also interviewed in English.

Background:

Married housewife with four children aged 6, 5, 3 and 9 months. Ethnic background/nationality' Pakistani.

More about me...

This interview involved two people, a woman who is a beta thalassaemia carrier (interviewed in Mirpuri) and her sister-in-law (interviewed in English). The woman discovered she was a beta thalassaemia carrier when she was screened on entering the UK, and this was confirmed again in her first pregnancy. Her husband's family has a history of beta thalassaemia major and his brother died as a result of the condition in 1997. 

The couple were persuaded to have antenatal diagnosis (CVS) in their first pregnancy. The CVS had to be repeated because the results were unclear the first time. The baby was diagnosed with beta thalassaemia major, but the couple did not want a termination, and went ahead with the pregnancy. Their daughter remained well after birth until she was aged four, but then she started needing regular blood transfusions and has been having them ever since. She was 6 at the time of the interview.

The couple have since had three children without any diagnosis during pregnancy, and none of them has been affected by the condition. They now regret having had CVS the first time. 

The woman's sister-in-law joined the interview and explained she was present with the couple when they went for the CVS. She felt they had been pressurised into having antenatal diagnosis the first time, and that they did not realise they had a choice. The family's views about the condition have been strongly affected by the experiences of several relatives, some of whom seem to have inherited a milder form of the condition which has not required regular blood transfusions. As a result the family do not always trust the advice they have been given by professionals or the accuracy of the diagnosis.
 

Although she had CVS in her first pregnancy she knew she would not terminate. In her other pregnancies she had no tests and has left it to Allah. (Audio in Murpuri/Text English translation)

English translation, audio clip in Mirpuri.

We said that we would not have termination. We thought that we will get checked, and we'll know, but we will not have a termination. Even if we get checked, we would not terminate.

Okay.

At least it will come into the world. Okay, it will see whatever life it has with its mother and father.

Okay. So then you had your daughter with thalassaemia.

Yes.

After that, why didn't you have tests for your other children?

I didn't have the test because there wasn't any point in getting checked, because neither did we want to have a termination and neither did we think there was any point. Now there was no point in me getting my daughter tests. 

And did you clearly say no each time?

Yes, each time.

And then when your children were born, when you were pregnant, what feelings did you have, during pregnancy, about thalassaemia? 'What will happen if the child has it?'

I left it to Allah. I was dependent on the beautiful Allah, that Allah will do whatever. The individual cannot do anything.
 

She is glad their daughter who has beta thalassaemia major was born and that they did not agree to termination. (Audio in Murpuri/Text English translation)

English translation, audio clip in Mirpuri.

Okay. And you said that your husband didn't agree initially anyway [to antenatal diagnosis]?

Yes. He didn't agree initially. When he talks, he says 'we have three sons now'. Now we have finished. Allah give them life, they are enough, and he says 'if we had terminated, how would we have seen our daughter'.

What do you mean?

If we had terminated by listening to others, if we'd have terminated, then we wouldn't have our daughter. He says, 'Okay, our daughter is troubled, but Allah has given her these troubles, and at least she is in front of our eyes. We don't have to regret that we terminated her or something happened. At least she is in front of our eyes.'

And when your daughter asks you 'why do I have this', what are your feelings?

I feel that, look there are others as well. Whatever Allah wanted, then this is okay.
 

It was very stressful knowing in pregnancy that the baby had beta thalassaemia major, especially because other family members had died from the same condition.

Sister-in-law: Because finding out that there might be something wrong with the baby, keeping in mind they were aware that we'd already lost a brother and we had to - that were thalassaemic anyway - I think they went through more stress within the next nine months knowing there might be something wrong with the baby, or it might be a carrier or a major, than not knowing. They wouldn't have stressed. So that makes it worse. Because he was told that, 'Oh, right, it's, I think that, you know, she might need blood transfusions' blah-di-blah. So with him, he had all these flashbacks of what he's already been through with my brother. So that's even more stressful. Especially knowing that a member of, you know, that they've lost a member of their family. She's lost a member of her family, but the difference there is she wasn't aware that she had thalassaemia. Whereas we went through so many years and we lost our brother. So that I think, they both went through this depression phase and it was very, very hard on them, because they were told that she's going to go through exactly what my brother went through. Which was very, very hard. You've lost one, you don't want to lose anyone else.
 

Her daughter remained well till she was four, then started blood transfusions. Sometimes she asks why she is ill but her brothers are well. (Audio clip in Mirpuri.)

English translation, audio clip in Mirpuri.

Okay, and is your daughter well, or is she ill mostly, or how'

She stays well if she has blood. But sometimes she gets it. She sometimes vomits, but is mostly well. She had blood [transfusions] after four years. She's been well in the first four years. We've been taking her to the doctor and they've been checking that she's making blood. But in a minute, she had a fever and had less blood. 

So it's been two years now?

They kept checking her. 

And how often does she have blood?

Every month, after four weeks.

and injections etcetera'

'yes, we give them to her at night.

Okay.

She says 'Why am I unwell like this? My brothers are fine. Why do I have to have blood?', she talks like this, like, 'Why am I ill?'

And she's only six years old?

Yes.

Then how do you respond?

I say, 'It's from Allah, dear'. Now look her uncle had it as well. These are Allah's doings. People cannot do anything. Then when she sees everyone in hospital, young boys, I mean there is everyone in hospital, she's not on her own, everyone has blood. She sees everyone and she knows that she is not alone. She's intelligent and she talks. That's her photo up there.
 

Professional learning: Her brother and sister-in-law felt pressured into having CVS and considering termination in their first pregnancy. They did not really feel they had a choice.

Sister-in-law' I was there when she actually went to get the screening [CVS] done in [city]. But before that that's all they were pressured into, 'Have the screening done. It's for your benefit.' And after that it was like, you know, 'It's, at least you'll find out, and you can abort the child.' Which they didn't believe in. As I say, I mean there wasn't much information given to the parents for them to actually make their own mind as to, 'Is it an option? Have we got an option? Or do we have to have the screening done?' At that time they thought they had to have the screening done. That's why they went and did it. But it was I think when time went by that they found out that it was just something if they didn't want to do it they had an option not to do it.
 

Professional learning: They have experience of a family member who was diagnosed with beta thalassaemia major but has remained healthy, so they do not feel they can trust diagnostic tests in pregnancy.

This feeling in the family about not having a termination, is that, what's that based on? Is it more based on religion or just, just morals and ethics, your own morals and ethics? What's it, what's it based on?

Sister-in-law:  It's not based on religion.

It's not religion?

Sister-in-law:  No. It's not based on religion. I think, it's the way everybody feels in the family. But that's about it really. Religion, I don't feel religion comes into it. We don't think that far really. But as I says, I mean, they diagnosed as, my nephew as being a carrier and said that he'll need blood transfusion and everything. And he's 24, he's never needed a blood transfusion, and he's healthy and he's from Birmingham.

But he's a carrier?

Sister-in-law: That's what they said. I think that's what they said but, no, at first they says that he were a major, sorry, and then they did the test again and they says, 'Oh, no, no, no, he might just be a carrier, he might just be a carrier.' But before that they said that he'd need blood transfusions. And as I says he's 25 - yeah, 25 - and he's had no problems. So at the end of the day I mean doctors can make mistakes.

Footnote: It can sometimes be difficult to establish a clear diagnosis. Some people inherit a mild beta thalassaemia mutation, and they may have a form of the condition called beta thalassaemia intermedia. People with a very mild thalassaemia intermedia may not need regular blood transfusions. It is unclear in this case whether the individual was only a carrier or had a very mild form of the condition.

Professional learning: She felt the specialist counsellor had not advised them very well. The family had more of a bond with the previous counsellor.

Would you have felt, if they'd phrased it differently and said, you know, 'There is a choice and you might want to think about termination' would you have felt happier with that?

Sister-in-law:  Yeah.

You wouldn't have minded them mentioning that as a choice?

Sister-in-law:  Yeah.

Even if it wasn't something that -

Sister-in-law:   Yeah.

-that your family would want?

Sister-in-law:   It's up to the individual really. If they think they've been given a choice, that is different. But if they think you're being told what to do, that's totally different.

Have you ever, the family, raised it with the professionals involved and, and tried to point these things out to the people who counselled you?

Sister-in-law:   I had a word with the previous counsellor. She was, she was there with us all through the death and everything, and then she kind of left soon after. But it's that bond you had with her. And then she suddenly left. But they don't have, they don't have much of a choice because they're just telling you what the doctor's telling them. So that's really it. [baby rattle] It's a 9 to 5 thing really, isn't it? They're there, they're doing their job. They're kind of bringing it across to you of what you need to do, and how you need to do it, and then they're going to go home.