Interview 34

Age at interview: 38
Brief Outline: Mother who has a child with sickle cell anaemia diagnosed through newborn screening. If she had known in pregnancy what she now knows about the condition she might have had a termination. Video and audio clips read by an Actor.
Background: Housewife, single, with 3 children. Ethnic background/nationality' Black African.

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This mother's third baby was diagnosed with sickle cell anaemia through newborn screening. She knew there was a risk the child might be affected, but had decided not to have diagnostic tests in pregnancy because she did not think the results would alter her decision to continue with the pregnancy. The child has been very well until recently, but has been very ill in the last few months. If she had known during pregnancy how badly affected her daughter could be, she might have taken a different decision about diagnosis and termination. 

She is a Muslim and has taken religious advice about termination of pregnancy. She has been advised that if there is a condition which is life-threatening, she would be allowed to terminate the pregnancy up to about 12 weeks. She is not planning another pregnancy, but if she did get pregnant again, she would have another CVS and would terminate the pregnancy if the baby had sickle cell anaemia.

She has talked to an imam and been advised that ending a pregnancy is allowed in Islam if the baby has a life-threatening illness. (Read by an actor.)

She has talked to an imam and been advised that ending a pregnancy is allowed in Islam if the baby has a life-threatening illness. (Read by an actor.)

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Video and audio clips read by an actor.

In the Koran, if the pregnancy is going to take the life of the child or take my life, then it's better I terminated it. Yeah. Because I'm a Muslim. 

Have you ever talked to anybody about what Islam would say in the case of finding out that the baby had SS [sickle cell anaemia]?

Yeah.

Have you taken advice?

Yeah. I was told if the baby, as I told you earlier, if the baby, if the sickle cell, if the disease is going to take the life of the child, or take my life during the pregnancy, then it's best I terminate it, yeah.

Did you know about that before…?

No.

Who did you ask? Did you go to a local Imam?

Yeah. 

OK. So you feel that if it did ever happen to you again, you'd feel comfortable from a faith position?

Yeah. Yeah, sure, I would terminate it. Because I'd ask for forgiveness from Allah, because there's no point in bringing the child into the world to come and suffer, to suffer. It's no good. Because I don't want to suffer, and, to me, as I don't want to suffer, I don't want the child to suffer as well. 

If you had another pregnancy and found the baby was SC [haemoglobin SC disorder], would you still go ahead?

[Sighs] At the moment, at the moment, no. At the moment, no, because I'm still going through a lot, so I don't want any more.

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.