Screening for sickle cell and beta thalassaemia

Interview 19

Age at interview: 36

Brief outline: Mother who knew she was a sickle cell carrier. Her partner believed he was not a carrier, but her third baby was born with sickle cell anaemia. In this pregnancy she had CVS; the baby is a carrier only.

Background: Registered childminder, with three children aged 13, 11 and 9, now pregnant with new partner. Ethnic background/nationality' Black African.

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This mother is in her fourth pregnancy. She has sickle cell in her family and knew already she was a carrier. In her first pregnancy her partner was abroad and could not have carrier screening, so she decided to have amniocentesis anyway to check. The baby was unaffected. 

Then she had two pregnancies with a new partner who assured her he was not a carrier, so she believed she would not need any testing. She reflected on how common it is for people to believe wrongly that they cannot be a carrier because they are fit and active.

The first baby with him (her second pregnancy) was unaffected. In her third pregnancy she had an infection for which her partner also had to be treated, which involved a blood test at the same time. The results showed he was in fact a sickle cell carrier. By that time she was over 20 weeks pregnant. She felt it was too late to do anything and did not want to risk an amniocentesis. Her daughter was born with sickle cell anaemia. The daughter is now 9 and has been in very good health, with no crises, but the mother knows from family and friends' experiences that this could change at any time, and stroke is a possibility. 

She has had good support and information from her sickle cell counsellors, but she has had a few problems with her daughter's teachers and staff at her local GP surgery not being fully aware of the needs of children with sickle cell disorders.

She is now with a new partner and was about 17 weeks pregnant at the time of the interview. As soon as she discovered she was pregnant, she asked her partner to be tested and he too is a carrier, so she decided to have a diagnostic test (CVS) as soon as possible. The results showed that the baby is a carrier only, but she was sure she would have terminated the pregnancy if the baby had the condition. Even though her daughter is well, she feels it would have been difficult to cope with another child with the condition, particularly given the anxiety and uncertainty about their future health. She believes screening and diagnostic testing are important and advises other parents to go for screening so they are informed and can make a real choice. 


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