Screening for sickle cell and beta thalassaemia

Interview 11

Female
Age at interview: 30

Brief outline: Mother knew she was a sickle cell carrier; partner had screening late in pregnancy. She was shocked when the baby was born with sickle cell anaemia. Although the baby is well, she was so afraid of having another affected baby she ended her next pregnancy.

Background: Chef, single, one child aged 2. Ethnic background/nationality' Black African.

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This mother had screening when she came to the UK from Africa, and another test in pregnancy confirmed she was a sickle cell carrier. She tried hard to persuade her partner to go for screening, but he was reluctant. Eventually he had a test very late in pregnancy but his results came back after the baby's birth. At the same time, the baby's newborn screening results showed she had sickle cell anaemia. The parents were shocked. The mother felt ashamed and guilty, and couldn't tell anyone what had happened at first. Even though her daughter has been generally well so far, she feels very protective and worried about her future, and she is afraid of having another baby with the condition. When she became pregnant again unexpectedly she decided to have an abortion because she was so anxious. This was a very painful decision for her. 

She is very well supported by her local sickle cell counsellors, and has had good information. She feels more should be done to inform employers and people working in schools, nurseries and local authorities about the needs of children with sickle cell anaemia and their parents. Although at first she did not tell anyone about her daughter's condition, now she spends a lot of time spreading information and raising awareness.

She believes it is really important for people to be screened, preferably before they start a relationship with someone, but also in pregnancy. She feels it is better to have as much information as possible in pregnancy, rather than to discover the baby is affected after birth as she did. 

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