Screening for sickle cell and beta thalassaemia

Interview 21

Female
Age at interview: 31

Brief outline: Both partners knew they were beta thalassaemia carriers. Second child born with beta thalassaemia major. Mother has had CVS in two pregnancies since, and would terminate the pregnancy if the baby was affected. Video and audio clips read by an actor and recorded in Mirpuri.

Background: Married housewife, four children aged 10, 9, 8 and 2. Husband unemployed. Ethnic background/nationality' Pakistani.

Audio & video

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Read below

Both partners knew they were beta thalassaemia carriers. Her husband's parents also knew they were both carriers; they had had six children and none of them had inherited beta thalassaemia major. As a result her husband and her in-laws all felt antenatal diagnosis was not necessary. Their first child was found to be a carrier, but during the mother's second pregnancy her mother-in-law also gave birth to another baby, and this time the baby had beta thalassaemia major. The woman and her husband decided they would have antenatal diagnosis and discovered their unborn baby also had the condition. She was already four and a half months pregnant by this stage, and felt it was too late for her to have a termination. 

However, since then she has had CVS in two more pregnancies and would terminate another time if she found the baby had beta thalassaemia major. Life is very hard for her second son who has the condition, and she would not want another child to go through the same thing. She especially wants other Muslim mothers to know that many 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 termination is forbidden in Islam. She therefore thinks it is important that women do a pregnancy test as soon as possible so they can make sure they have antenatal diagnostic tests early in pregnancy. 

She also thinks it is important that people should be encouraged to have screening before marriage and make sure if they are a carrier that they do not marry another carrier. It would be better if families did not arrange marriages and make this public while their children are still very young, as this makes it difficult to cancel the arrangement later on if both partners turn out to be carriers. 

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