Screening for sickle cell and beta thalassaemia

Interview 29

Female
Age at interview: 29

Brief outline: Mother discovered as a student she was a beta thalassaemia carrier. When she became pregnant the first time her husband was tested and is not a carrier. Video and audio clips read by an actor.

Background: Finance officer, married to community development worker, with one child aged 23 months. Ethnic background/nationality' Indian.

Audio & video

As a child, this mother often felt tired and had a lot of headaches. She had blood tests and was told she was anaemic. When she went away to university, her doctor decided to test for beta thalassaemia, and she was found to be a carrier. At the time she was given very good information and a thorough explanation. 

She suggested to her parents that they should be tested and her mother discovered she was a carrier. She herself had an arranged marriage and her parents decided not to tell her husband's family that she was a carrier. It was only during her first pregnancy that she was tested again and her husband was tested. He is not a carrier, and so they did not need to take any further action. 

They decided not to have any screening for Down's syndrome and would not have terminated the pregnancy for either Down's sydnrome or beta thalassaemia major. They are Sikhs, and her husband is more religious than she is. They both felt their decision not to test for Down's syndrome was more a personal moral choice than a religious choice, whereas she felt her parents' generation would attach more importance to religious principle in decision-making. However, she believes it is important for parents to have as much information as possible to prepare themselves, and be able to make fully informed decisions. 

When her children are grown up, she will leave it to them to decide how they want to approach screening.

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