Screening for sickle cell and beta thalassaemia

Interview 18

Age at interview: 40

Brief outline: First baby diagnosed with sickle cell anaemia after birth. As a Christian, the mother chose not to have prenatal diagnosis in her next pregnancy. The second baby is a carrier. Her third baby is not a carrier. Video and audio clips in French.

Background: Full-time mother, with three children aged 9, 8 and 3. Partner is a driver. Ethnic background/nationality' French African.

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The couple's first baby was born in Paris where they were living at the time. France had a policy of screening all newborn babies and they found their son had sickle cell anaemia. They had not realised this was being tested for, and it was a shock. Their own results showed they were both sickle cell carriers. For a while they could not talk about it together. They advised other members of their family to be screened and some of them have also turned out to be carriers.

Although they were seen at a specialist hospital in Paris, they were not given much advice about how to look after the baby. The mother found support through other mothers of babies with sickle cell anaemia. In her second pregnancy she did not have any prenatal diagnosis, because as a Catholic she would not have wanted to end the pregnancy anyway, and would rather not feel anxious for the rest of the pregnancy. The second baby was also tested at birth and is a carrier.

The couple then moved to the UK, and had their third baby. The mother was told she needed to have amniocentesis because of her age, to check if the baby had Down's syndrome, even though she would not have terminated the pregnancy if the baby had the condition. She was not aware at the time that the baby was also being tested for sickle cell anaemia, but the results came back negative. After birth it was confirmed that the third child is not a carrier. Although she felt she was not very well informed about her choices for antenatal screening in the UK, she thinks the services for people affected by sickle cell anaemia and levels of awareness amongst health professionals have been outstanding. 

Living with a child with sickle cell anaemia can be difficult at times, and he has had crises since he was 9 months old. It became very difficult for her to manage a full-time or even part-time job. But she loves him very much, and her faith helps and supports her. She feels it is important that people know about sickle cell disorders and talk about it more openly. 

Each person has to make the choice that is right for them about whether they can cope with a child with the condition. One of her friends with a child with sickle cell anaemia is pursuing pre-implantation genetic diagnosis as an alternative to antenatal diagnosis. 


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