Screening for sickle cell and beta thalassaemia

Interview 24

Female
Age at interview: 32

Brief outline: Both parents are beta thalassaemia carriers. Had CVS in first pregnancy. Baby diagnosed with beta thalassaemia major and they continued the pregnancy. In three pregnancies since they chose not to have antenatal diagnosis and none of the children is affected. Some audio clips in Mirpuri. Sister-in-law also interviewed in English.

Background: Married housewife with four children aged 6, 5, 3 and 9 months. Ethnic background/nationality' Pakistani.

Audio & video

This interview involved two people, a woman who is a beta thalassaemia carrier (interviewed in Mirpuri) and her sister-in-law (interviewed in English). The woman discovered she was a beta thalassaemia carrier when she was screened on entering the UK, and this was confirmed again in her first pregnancy. Her husband's family has a history of beta thalassaemia major and his brother died as a result of the condition in 1997. 

The couple were persuaded to have antenatal diagnosis (CVS) in their first pregnancy. The CVS had to be repeated because the results were unclear the first time. The baby was diagnosed with beta thalassaemia major, but the couple did not want a termination, and went ahead with the pregnancy. Their daughter remained well after birth until she was aged four, but then she started needing regular blood transfusions and has been having them ever since. She was 6 at the time of the interview.

The couple have since had three children without any diagnosis during pregnancy, and none of them has been affected by the condition. They now regret having had CVS the first time. 

The woman's sister-in-law joined the interview and explained she was present with the couple when they went for the CVS. She felt they had been pressurised into having antenatal diagnosis the first time, and that they did not realise they had a choice. The family's views about the condition have been strongly affected by the experiences of several relatives, some of whom seem to have inherited a milder form of the condition which has not required regular blood transfusions. As a result the family do not always trust the advice they have been given by professionals or the accuracy of the diagnosis.

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