Screening for sickle cell and beta thalassaemia

Interview 20

Female
Age at interview: 36

Brief outline: Mother asked for screening in pregnancy because of family history and found she was a sickle cell carrier. Newborn screening showed her baby was also a carrier. Her white partner has not been screened. some of the video and audio clips are in French.

Background: Researcher, with one child aged 4, now pregnant again. Husband also a researcher. Ethnic background/nationality' half African, half European.

Audio & video

This mother asked for a screening test in her first pregnancy five years ago, because there was a family history of sickle cell on her father's side. She was not surprised that the result showed she was also a carrier. The results were sent to her in writing and she was not offered any specialist counselling. She asked her GP about it, and was reassured that it would not affect her health, although the GP did not seem to know a great deal about the condition. 

She is married to a white northern European partner, and assumed he would not need to be screened. Now she knows that some white people can also be carriers, she feels perhaps healthcare staff should have invited her partner for screening as well. In her current pregnancy, she mentioned to the midwife that she is a carrier and this was recorded in her notes, but again partner screening was not discussed with her.

Her first baby had newborn screening which showed that the baby was also a sickle cell carrier. The mother was more surprised about this than her own result. She will have the second baby tested when it is born, and will ensure both children are aware of their screening results before they start planning to have children. 

She believes it is important to know as much as possible about your health and your children's health, and recommends screening to other parents as a simple but important test. 

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