Screening for sickle cell and beta thalassaemia

Interview 22

Female
Age at interview: 20

Brief outline: Discovered she was a beta thalassaemia carrier during her first pregnancy. Her husband was tested and is not a carrier. Their first daughter is a carrier. Video and audio clips read by an actor recorded in Urdu.

Background: Housewife, married with two children aged 3 and 5 months. Ethnic background/nationality' Pakistani.

Audio & video

This mother discovered she was a beta thalassaemia carrier when she was screened during her first pregnancy. At first she was shocked, but was quickly reassured that being a carrier does not mean you have a serious illness. She had heard about it in Pakistan and knew that people who are beta thalassaemia carriers have some protection against malaria. Her husband was also worried at first. He agreed it was important to be tested and they were relieved to learn he was not a carrier. Their first daughter was tested when she was about three, because she was looking pale and had lost her appetite. She was also found to be a beta thalassaemia carrier. The mother feels it is important that she and her daughter should eat a healthy diet. The couple's second baby has not been tested yet, but they will have her tested soon, as they would like to know if she is a carrier.

If the couple had both been carriers, they would probably not have had diagnostic tests in pregnancy, and as Muslims they felt termination would have been a sin. They would have accepted Allah's will if they had been sent a child affected by beta thalassaemia major. However, when their own daughters grow up, they want to make sure their future husbands are screened before they arrange their marriages. If it can be avoided, they would not want their girls to have the distress of having a seriously ill child. They believe it is something to talk about openly with the other families concerned.

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