Screening for sickle cell and beta thalassaemia

English translation, video and audio clips in Sylheti.

How else can we help families, what can we do to help families like yourselves?

Mother' To give us hope and faith.

What advice would you give them? 

Father' Although we don't really have the skills to give advice, we would say that within your family, if you do suffer from such illnesses, then you should uptake the recent developments and advances with medicine. Always keeping faith with Allah's powers, I would say to try what the doctors are offering, perhaps it will be successful. With full faith in Allah. Allah has said to benefit from medical advances. We don't know how the illness will progress, for that reason; it is important to inspect any new inventions or advances in the medical profession that may return the patient to good health. I also feel that although the treatment processes such as carrying the bag, the injections, with older children it can be difficult; I have seen it benefiting my son. You have seen too. Allah has blessed my son. The rest is up to Allah. I would also hope that other families place their full faith in Allah. If their son and daughters are patients, then to take the advice of medical professionals

They need to be brave?

Father' Yes, keep your mind strong. 

Isn't it stressful staying in a hospital? Going there and coming back takes a toll.

Father' That's right, but whatever befalls you, you have to confront it and go forward, you can't keep looking backwards that's not going to work, you have to advance. My wife has said 8-9 years, I wasn't here, without me.
 

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. 

I was just going to ask about your daughter - you, you mentioned that your first thought was that you would go for adoption?

Yes.

Did it ever cross your mind in that case to end the pregnancy, or was that not an option for you?

That wasn't an option for me, because I was far gone in the pregnancy at that point.

If it'd been earlier, was that something you might have considered?

Yeah, if it had been earlier, I would have had an abortion.

For some people, kind of religion plays a part in their decision making. I don't know if that's the case for you. What kind of factors were you thinking about in thinking about abortion and adoption, whether to continue?

Well, religion or no religion - well, I've come from a very religious background. My granddad is a Reverend - well, a Reverend headmaster. My Dad is an educationalist as well, he's a teacher. So, but sometimes I think you just have to be very practical about things. I want to be a realist, I want to be very realistic about things. I think every child deserves a right to life, but I also think every child deserves a right to a good life as well. A fulfilled life. At least health is one thing you cannot buy, and if a child wouldn't have a good quality, life quality, why would I bring that child into the world? So I'd rather not put my child through that and have an abortion, have an abortion instead.

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.

Were there any ever points where you, you found that you were parting from each other in your thinking? Or did you kind of keep pace with each other in terms of your attitudes to termination?

Father' Well, [wife] is a devout Buddhist. So she was meditating, she was believing in, you know, she was praying to Buddha every day and things like that. Whereas I was more, I was more - but it's different, you see, because I'm not as attached to the baby as her. Because, you know, she wanted to keep the baby. Whereas me as a father I don't have that sort of emotional bond to the baby yet. So, yeah, I think, I tell her to be - for my part I just thought, you know, if it needs to be, it's termination. But on her part she was, you know, hoping all the time to keep the baby. Whereas I was, whereas I prepared, I was prepared to, to let go, sort of thing. But I think she's, emotionally she didn't want to do that, so.

Do you think you, [addressed to female partner] would have done if it had come to it?

[discussion in Vietnamese]

Father' Yes, she said, you know, if need to be, then she'd do it. But it would be a big, I think it would be just, you know, emotionally very damaging for her.

Does Buddhism say anything specifically about termination?

[discussion in Vietnamese]

Father' No, not really, no. More, I think it's more like letting it go, really, and then - there's nothing specific on this issue, no, no. But it's just more, I think it's just praying to something, I think, that - just a belief that, you know, you've been a good person and, you know, good things happen sort of thing. But that's more for [wife] than me, you know. I'm not, not so belief in that.

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.

Was there anybody in your family who you knew was a carrier or had sickle cell?

Nobody. My brother's AA [not a carrier], I'm AS [sickle cell carrier].

And in your husband's family?

Nobody. Nobody's ever carried - nobody. Nobody. Yes, nobody. They don't have anybody that has sickle cell trait, nobody. It's just me and him.

What happened in both your families when you got this news, because that has implications for them as well I guess?

Well, when I got the news and when she explained what it was, the AS kind, the sickle cell trait and everything, my family is a family based on faith, so it wasn't, to me it wasn't an issue. It wasn't an issue at all, because we know where we're coming from. We know the God we serve. And we know that once you're positive about stuff, the bible says what you ask from God you get. And the bible says you can't ask for - like you can't ask for like bread and he gives you something else. So I know asked for a healthy baby and that's what I'm going to get. So that's what my family believe I'm going to get. In fact that's what they know I'm going to get, because we all pray. We're all praying, they're praying for me and praying for my - in fact, sickle cell trait doesn't even come at the back of my mind. The baby's going to come out as AA. I pray that every day and I believe it. So it's not an issue.

So did any of your family then go and get tested themselves or retested?

Nobody. Nobody. Nobody, because it's all a matter of faith. It's what you believe inside. 

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.

English translation:

There is one thing I forgot to say in fact at the start, which is very important, in the video cassette which they gave us to watch at the beginning. And it was focused on African society, and you really saw what happens in the African context. People just don't talk about it. And on the tape they explained even that there are some couples who just separated. The husband sent his wife away, because for him it was the woman who had brought this curse into the family and made the children sick. And that was like, 'Ooh' I said, 'Right, okay'.

French original:

Il y a un truc que j’ai oublié de dire en fait au début qui est très important dans la cassette qu’on nous avait donné à regarder au départ, et là c’était focalisé sur la société africaine et on voyait vraiment comment ça se passe dans le milieu africain. Les gens n’en parlent pas, et sur la cassette on expliquait même des couples qui se sont carrément séparés, le mari qui a renvoyé sa femme parce que pour lui c’était cette femme qui a amené la malédiction dans sa famille et les enfants étaient malades. Et ça c’était, ‘Ooh,’ j’ai dis, ‘Bon, d’accord.’