Screening for sickle cell and beta thalassaemia

Continuing with an affected or at risk pregnancy

For many people, antenatal diagnostic testing will reassure them that their baby does not have the condition and they can relax and enjoy the rest of pregnancy. But for people who are told their baby does have a sickle cell disorder or beta thalassaemia major and decide to keep the baby, the rest of pregnancy can be an anxious time. Parents may worry about how they will cope, as well as what life will be like for their child.

In some cases, parents said they might have preferred not to know the diagnosis in pregnancy, because it made them so anxious. One woman explained what it was like for her brother and sister-in-law, particularly as they had experience of other family members dying from beta thalassaemia major.

Some people who did not have antenatal diagnosis but knew they were carriers agreed that if they would not consider a termination it was better not to know. 

However, other people who knew that their baby might be affected but were not tested found the uncertainty quite stressful. One mother thought she might give up the baby for adoption if it was born with sickle cell anaemia, but she felt very differently after the birth.

See also:

'Newborn screening after screening in pregnancy'

'Living with sickle cell disorders'

'Living with beta thalassaemia major and intermedia'

Last reviewed September 2015.

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