Screening for sickle cell and beta thalassaemia

Deciding what to do after diagnosis

Parents who have CVS or amniocentesis during pregnancy and discover their baby has a sickle cell disorder or beta thalassaemia major can choose whether to keep the baby or terminate the pregnancy. Some people know they want to keep the baby and have diagnostic tests just to help prepare themselves, others feel sure they want to end the pregnancy, and some are undecided. The choice to end the pregnancy, or not, will depend partly on cultural and religious values. It will also reflect people's views about how severe the condition is.

Beta thalassaemia major is a life-threatening anaemia which usually requires regular blood transfusions throughout the person's life, although in a very few cases it can be cured by bone marrow transplant. E beta thalassaemia may also be a severe condition requiring regular transfusions, or may take a milder form. Beta thalassaemia intermedia is generally a milder condition, although for some people there can still be a range of complications, and transfusions may be needed.

It is difficult to predict how people will be affected by sickle cell disorders; some may live relatively symptom-free lives, some will have occasional crises but remain well in between, while others have severe pain and other complications such as stroke, serious infections and breathing problems. Again, in a very few cases the condition can be cured by a stem cell or bone marrow transplant. Currently, people with sickle cell anaemia typically live until 40-60 years of age, although milder types of sickle cell disease may have no impact on life expectancy. It's hoped the outlook will continue to improve as newer treatments are developed (NHS Choices 2016).

Deciding what to do for the best can be very difficult and painful. It has to be a personal decision, taking into account moral and religious views, what stage the pregnancy has reached, family circumstances, views about what life would be like for the baby and the parents, and the needs of other children in the family. One woman who already had a child with sickle cell anaemia [Interview 11] had an abortion in her next pregnancy without waiting to see if the baby was affected, because she was so afraid of seeing another child suffer with the condition.

The stigma surrounding both the conditions themselves and the issue of termination make this a difficult subject for people to talk about openly. However, several people told us that they had considered termination very seriously and some said if it happened to them again they would choose a termination next time. 

For some people the timing of the diagnostic tests made it difficult to decide to have a termination. One mother explained that she felt it was too late at four months, especially when she was told termination at that stage would involve having an induced labour. 

She recommended other parents should do pregnancy tests and get in touch with antenatal services as early as possible so they have a choice what to do.

People had mixed feelings about the kind of information and advice they were given to help them decide what to do. One mother said although she was not pressured in any direction, she felt that most of the information she was given focused on all the problems a child with sickle cell anaemia might face, rather than information about how well some people manage. Her own child (now aged 5) has been well so far, although she knows many people do have serious complications.

For both these parents, the fact that their own child was currently in good health was important in how they felt looking back at the counselling they had been given. By contrast, one woman whose daughter with sickle cell anaemia has recently had a stroke, felt she had not known enough about how serious the condition can be.

See also:

'Deciding to have diagnostic tests'

'Reasons for deciding not to have diagnostic tests'

'Living with sickle cell disorders'

'Living with beta thalassaemia major and intermedia'

'Advising people about their options'

If you would like to hear the stories of other parents who have faced this decision, our sections on Antenatal screening and Ending a pregnancy for fetal abnormality

Last reviewed December 2018.
Last updated
December 2018.


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