Screening for sickle cell and beta thalassaemia

Interview 07

Female
Age at interview: 37

Brief outline: Mother has hameoglobin SC disorder; partner is a sickle cell carrier. Had CVS in two pregnancies. In third pregnancy chose not to have diagnosis; baby born with sickle cell anaemia and has since had a stroke, which the mother did not realise could happen.

Background: Full-time mother, single, three children aged 10, 8 and 4. Ethnic background/nationality' Black African.

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This mother has haemoglobin SC disorder; in her first pregnancy she discovered her partner was a sickle cell carrier. They were shocked to discover this, as he had always been fit and active. They now know that being a carrier does not affect your general health. They decided to have CVS (chorionic villus sampling) in the first two pregnancies. The first baby was diagnosed with SC disorder, like her mother. They knew they wanted to continue with the pregnancy, but she was glad to be able to prepare herself to have a baby with the condition. The second baby was found to be a carrier only. 

In her third pregnancy she chose not to have diagnosis. This was partly because she found CVS quite painful, and she decided she would rather not have the anxiety during pregnancy. They were shocked when newborn testing showed the baby had sickle cell anaemia. The first child (with SC disorder) has had many crises and caring for her has been quite difficult. The third child had been very well until recently, when she had a stroke resulting from the sickle cell anaemia. The mother did not realise this was a possibility, and now feels she would have liked more information about complications associated with sickle cell anaemia before deciding whether or not have antenatal diagnosis. Although the child has recovered well, it is a constant worry that it may happen again.

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