Screening for sickle cell and beta thalassaemia

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.

English translation:

That's a question I'd like to ask if it's OK with you. You have religious conviction. And what part did religion play or does religion play for you in sustaining you in your situation? Because you give me the impression that you're managing this situation well. Does religion play a role?

It plays an enormous role. Because I start from the principle that in life everyone has their crosses to bear. And for me, my first son, I've taken him up as my cross, which can be heavy sometimes. But at the same time it's light, because I love him. And in the life that I travel with him, I can see the life of Christ, and that helps to lighten my burden. And even when I go to hospital and especially when he has really, really bad crises, I know last time when I was there, the doctors were all there and they looked at me, given the child's condition, because for ten days he'd been on morphine and he wasn't eating hardly at all. It was very hard. And there's me, I arrive, I was there - yes, I pray with him but I always try to - not I try to - I play with him. I've always got a smile on my face. And one of the doctors said to me, “But how do you manage this, to always be smiling and always look as if nothing's wrong?” I said, “No. It's not because there's nothing wrong. I know there is something serious wrong. But at the same time because I know there's somebody else who's giving me the strength to bear it, and that I don't need to worry myself very much about it, that's it.”

French original:

Et c’est une question que je voulais te poser si c’est okay avec toi.  Tu as une conviction religieuse, et quelle part que la religion joue pour te maintenir dans la situation que tu es ? Parce que tu me donnes l’impression que tu gères cette situation bien.  Est-ce-que la religion joue un rôle ?

Enormément, parce qu’on part du principe, dans la vie on a chacun nos croix, et moi mon premier fils je l’ai pris comme ma croix, et qui peut être lourde parfois, mais en même temps je le gère parce que je l’aime, et la vie que je traverse avec lui je vois la vie du Christ, et ça m’aide à alléger mon fardeau.  Et même quand je vais à l’hôpital, et surtout quand il a des crises très très dures, je sais que là dernièrement on était même ici, les docteurs étaient là, elles me regardent vu l’état de l’enfant, parce que pendant plus de dix jours il était sous morphine, il ne mangeait pratiquement pas, c’était très dur. Et moi j’arrive, j’étais là, oui je prie avec lui, mais j’essaie toujours de - pas j’essaie, je joue toujours avec lui, j’ai toujours le sourire, et il y a même une des docteurs qui me dit, ‘Mais comment vous faites d’avoir toujours le sourire et puis d’être toujours là comme si de rien n’etait ?’  Je dis, ‘Non, c’est pas parce que de rien n’etait. Je sais qu’il y a quelque chose de grave, mais en même temps parce que je sais qu’il y a quelqu’un aussi qui me donne cette force de supporter ça, et je n’ai pas à m’inquiéter enormément, voilà.’

Video and audio clips read by actors.

Man' I just feel for me like I feel for other people. I do leave the individual to deal with all these issues. And if I'm against abortion, or I don't want to proceed, it's very personal and it's my choice. And even if I disagree, I entirely respect someone else that wants to go down other avenues. And what I strongly feel about it is that that should be available for everybody… Because I might be a believer, someone else may not be… I mean I'm firmly in favour of rules or procedures, very strict rules and procedures which have to regulate all this area… But, on this particular case, then I leave it to the individual. It's your conscience that decides. 

And in moral and religious terms for you the pre-implantation diagnosis is much more acceptable?

Man' Yes, but I mean not only for me morally but also physically. I think that there is quite a substantial difference if you are actually conceiving, you have conceived and you are going through the abortion without knowing - or you have tried to your best to avoid that possibility. I mean, here they advise that if you are pregnant you don't have to smoke, but no one tells you if you're getting pregnant and you know when you get a disease, to do everything you can to prevent it, in a very easy manner. So you take all the precautions. You're only doing it because first of all you want to protect and preserve the life, even, of who is the future being, of your offspring, and just like any other parent in any respect. So when I'm doing this procedure, I feel like I'm doing exactly the same. I'm trying my best not to smoke, not to do all these things that potentially we know could be harmful to the child.

Woman' And the same rule applies, not only for thalassaemia, if you have a condition and the only hope to save the child is bone marrow transplantation, or a number of operations which can be done can be improved by having a sibling or by being pregnant. And the general feeling is that somehow the church does not allow this. Because although you try the very best to save your child, why can't you try? If you can have any possible operation or replacement of an organ or whatever, to make one life better, why can't you do it with the help of for example a sibling, or with the help of technology? But not because you're worried about aesthetics. Because you're concerned about the health, because you want to try and give the best start in life for the child… And this is of course one of the questions which you just ask yourself over and over again. And that's why you do ask yourself, why is PIGD a better solution than just trying for it and then it may go well or it may not, and then you take the consequences, or you decide on the consequences, you decide on what you want to do. And in spite of being a practising Christian, and the church disagreeing with these decisions, that doesn't make me un-Christian, in the sense that just because I think I've got this belief, I hope it doesn't make me a bad person. 

And I just hope that I do it for the right reason and not because I've got great aspirations for the child. So that's the reason why. One friend of mine, actually, did ask me - I think it was when, after the negative result of the PIGD - she did ask me why would I go through this procedure when I would have to do an amniocentesis anyway, and if the test, if the diagnosis proved to be wrong and I was carrying an unhealthy child, I may have to choose the abortion, why would I not just try to get pregnant and then make that decision? Which, maybe in theory, is a very

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. 

Video and audio clips read by an actor.

I'm interested that, you know, some people would say “I'm a Christian, I wouldn't even think about termination.”

Yeah.

That wasn't your attitude?

No, it wasn't my attitude. It wasn't my attitude, no… I mean, to me it's that, you know, I didn't want to bring a child to the world that would really suffer, so that's the way I was thinking in my head, you know. And in fact at that time when I was pregnant with my older children, now I'm now a Christian, like I said, and now I'm more growing in Christianity. But at that time I didn't really sort of, I'd not really grown so much in Christianity at that time, so to me it didn't really matter. My idea was that I didn't want to bring someone that - because I'd been through so many pains, I know what it means to have pain. And my idea is that I don't want to bring someone to the world to have so much pain, you know.

Video and audio clips read by an actor.

I think all of it's our personal preference on that. I'm not that religious, whereas my husband is. But his way of thinking is - I mean, with this Down's Syndrome, that's the prime example for us at the moment. We've blatantly said, “No we do not want to get tested for it”, solely because we feel that we shouldn't judge it, basically. We should think if that's what's meant to be, we've got to, we will go through it. And it's going to be hard, because I know what the consequences in some of these pregnancies are. It's a major thing. You can't just take it lightly. But it was more, I wouldn't say it was religious. It was more just us, the way we think. And I think the younger generation would think on the personal level rather than a religious level. Whereas our parents would be more religious, thinking, “Well you shouldn't terminate, full stop.” 

Because that's what the religion says?

Yeah, yeah. I think our parents' way of thinking and our way, the next generations' way of thinking is, you think for yourselves and you think, “Well, religion, let's put that aside, and see - can we cope with it or would we be able to handle it?” And make a decision based on that. I think our mentalities are quite different from our parents' way of thinking.

Video and audio clips read by an actor.

I believe it, he's got it. But because I'm a Christian it's hard for me to believe deep down, because it's just - I don't know, because I believe God's capable of doing anything, to heal whatever. It might be strange to a human being, they might think, “Oh, it's impossible, it's impossible”. But for me, deep down, I know God does things in his own way. What's impossible to us is possible to him. So I know he might have it. But one day I know - it might sound strange - but I know one day he won't have it. So that's how I live my life and just hoping one day.

… I have faith God will do, but I still give him the medicine. I'm not going to stop the medicine because I have faith God will do it, and then stop. No. And when I pray, I say, well, “I do believe.” I tell God, “I do believe you're going to heal, but I'm giving him medicine. And if the medicine won't treat, won't heal him, then you do it. But I'll still give him the medicine.” So I'm not going to stop the medicine [laughs]. No.