Would you have felt, if theyd 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-law Yeah.

You wouldnt have minded them mentioning that as a choice?

Sister-lawYeah.

Even if it wasnt something that –

Sister-law Yeah.

-that your family would want?

Sister-law Its up to the individual really. If they think theyve been given a choice, that is different. But if they think youre being told what to do, thats 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-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 its that bond you had with her. And then she suddenly left. But they dont have, they dont have much of a choice because theyre just telling you what the doctors telling them. So thats really it. [baby rattle] Its a 9 to 5 thing really, isnt it? Theyre there, theyre doing their job. Theyre kind of bringing it across to you of what you need to do, and how you need to do it, and then theyre going to go home.

Sister-lawI was there when she actually went to get the screening [CVS] done in [city]. But before that thats all they were pressured into, Have the screening done. Its for your benefit. And after that it was like, you know, Its, at least youll find out, and you can abort the child. Which they didnt believe in. As I say, I mean there wasnt 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. Thats 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 didnt want to do it they had an option not to do it.

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

Sister-lawIts not based on religion.

Its not religion?

Sister-lawNo. Its not based on religion. I think, its the way everybody feels in the family. But thats about it really. Religion, I dont feel religion comes into it. We dont think that far really. But as I says, I mean, they diagnosed as, my nephew as being a carrier and said that hell need blood transfusion and everything. And hes 24, hes never needed a blood transfusion, and hes healthy and hes from Birmingham.

But hes a carrier?

Sister-lawThats what they said. I think thats 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 hed need blood transfusions. And as I says hes 25 – yeah, 25 – and hes 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.

English translation, audio clip in Mirpuri.

We said that we would not have termination. We thought that we will get checked, and well 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 didnt you have tests for your other children?

I didnt have the test because there wasnt 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.

English translation, audio clip in Mirpuri.

Okay. And you said that your husband didnt agree initially anyway [to antenatal diagnosis]?

Yes. He didnt 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 wed have terminated, then we wouldnt 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 dont 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.

Sister-lawBecause finding out that there might be something wrong with the baby, keeping in mind they were aware that wed 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 wouldnt have stressed. So that makes it worse. Because he was told that, Oh, right, its, I think that, you know, she might need blood transfusions blah-di-blah. So with him, he had all these flashbacks of what hes already been through with my brother. So thats even more stressful. Especially knowing that a member of, you know, that theyve lost a member of their family. Shes lost a member of her family, but the difference there is she wasnt 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 shes going to go through exactly what my brother went through. Which was very, very hard. Youve lost one, you dont want to lose anyone else.

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. Shes been well in the first four years. Weve been taking her to the doctor and theyve been checking that shes making blood. But in a minute, she had a fever and had less blood.

So its 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 shes only six years old?

Yes.

Then how do you respond?

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