Screening for sickle cell and beta thalassaemia

Interview 28

Age at interview: 32

Brief outline: Newborn screening showed the baby was a sickle cell carrier. The mother had been tested years ago and told she wasn't affected, but a new test showed she was a carrier.

Background: Full-time mother, single, with three children (twins aged 6, baby 4 months). Ethnic background/nationality' half white British, half Jamaican.

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Some years ago this mother asked to be tested for sickle cell because she had been feeling unwell, but the results came back to say that she was not affected. When her third baby was born recently, the heel prick test result showed the baby was a sickle cell carrier. This was a shock, and the mother was surprised to find that when she was re-tested she was a carrier after all. 

She is angry that her father knew there was sickle cell in the family but did not think she needed to know. She feels she did need to know, especially as the children's father is black, and she previously had another black partner who knew he was a sickle cell carrier. 

When she first got the letter with the baby's results it was a very worrying time. The letter gave a number to ring for more information, and she felt she was lucky to find someone there when she rang who could answer questions and reassure her. However, it might have been better to have someone to talk to about the results rather than getting them in a letter. The mother is dyslexic and finds reading medical information difficult. When a counsellor came to the house and explained how the gene is inherited using a diagram this was a real help. 

She thinks it is important that there should be greater awareness about sickle cell, and that more people should be tested before they get pregnant, whatever their family origin, so they can take steps to avoid passing the condition on. She will certainly make sure her children are well informed before they start having relationships. 


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