Screening for sickle cell and beta thalassaemia

Interview 14

Age at interview: 31

Brief outline: Mother discovered she was a sickle cell carrier in her first pregnancy. Father is not a carrier. He later changed his name and was recalled for screening when she was pregnant again. Audio clips in French.

Background: Cleaning company supervisor and social work student, married with two children aged 5 and 3. Ethnic background/nationality' Black African (Congo).

Audio & video

This mother was screened as part of her routine antenatal care in her first pregnancy. She did not feel she had been fully informed about the purpose of all the tests, so she was shocked to get a letter saying she was a sickle cell carrier. She had been taught about sickle cell when she was at secondary school in the Congo, but she did not know the English term 'sickle cell', only the French term 'la dr'panocytose'. So when she got her test results she did not understand what it meant and was very worried. She went with her partner for counselling, and the counsellor was able to translate it for her and explain. The specialist sickle cell clinic gave her much better information than she had had from the midwives.

Her partner was screened and is not a carrier. Her first son had newborn screening and was also found to be a carrier. In her second pregnancy her partner was called again for carrier screening, because he had changed his name and it was believed he was a new partner. They called to explain that he was the same person and that he did not need to tested again.

She has a friend who has a son with sickle cell anaemia, and she has seen how stressful family life is for her friend. If she had known earlier that she was a sickle cell carrier, she would have asked her husband to be tested before they got married. She recommends this to other people. Although it is very difficult to separate from someone you are in a relationship with, she thinks it is better than seeing your child in pain. She personally would not have considered terminating a pregnancy if she had discovered her unborn baby had sickle cell anaemia. She believes it is very important that there should be more awareness of sickle cell in society, and that midwives should give parents more detailed information about carrier screening.


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