Screening for sickle cell and beta thalassaemia

Seeing other family members/friends' experiences

Some people we talked to had seen other family members or friends with a sickle cell disorder or beta thalassaemia major, and described how this had affected their views. As a result, some people felt familiar with the condition, and confident that it was something they could deal with. Others worried they would not want to see their child go through the same experience.

Sickle cell disorders

One woman had once split up from a boyfriend after she discovered he had sickle cell anaemia. Now that her own daughter has the condition she feels differently, yet would not feel able to cope with a second child with sickle cell anaemia.

People's experience of seeing friends or family with sickle cell disorders sometimes made them fearful of having a child with the condition. One mother felt it would be better for a couple who are both carriers to separate rather than have a child who would be in a lot of pain like her friend's son.

Beta thalassaemia major and intermedia
Some people also had experience of friends or relatives affected by beta thalassaemia major. One family had several members with the condition, including some who had died as a result, but they were adamant that they would never consider termination (see Interview 24). One young boy in the family was hurt to be called Dracula by other children at school, because he was having blood transfusions. Another brother died after a series of complications, including diabetic coma, heart problems and kidney and liver failure. But the family felt poor care was partly to blame. They mistrust medical diagnosis, partly because a number of family members seem to have a milder form of the condition. (See 'Living with beta thalassaemia major and intermedia' for more information about different types of beta thalassaemia and difficulties in diagnosis).

A woman who had a son with beta thalassaemia major talked about another boy locally who had died of the condition after postponing one of his blood transfusions by only a week. She advised other women to have a termination rather than watch their child suffer.

Another couple who are both beta thalassaemia carriers had decided they would prefer pre-implantation genetic diagnosis rather than risk having a baby with beta thalassaemia major. Their views were influenced by the husband's experiences of seeing his sister living with beta thalassaemia major, as well as losing two brothers to the condition when they were very young.

Last reviewed December 2018.


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