Screening for sickle cell and beta thalassaemia

Newborn screening without screening in pregnancy

As part of the NHS national screening programme, all babies in England are offered a blood spot or heel-prick blood test when they are five to eight days old. Parents will be asked for their consent for the midwife to take a small blood sample from the baby's heel. The sample will be tested for several conditions, including sickle cell disorders. Some other haemoglobin variants (and conditions such as beta thalassaemia major) can also be detected during the screening process. (Beta thalassaemia carrier status cannot be identified at birth, because the presence of fetal haemoglobin masks carrier status for the first few months of life). Most people will be told nothing abnormal has been found. Others may learn their baby is a carrier of a particular haemoglobin variant, or has one of the conditions. 

Universal newborn screening means that every baby is offered the test, whatever the family origins of the parents. Many of these parents may never have heard of the conditions, and be completely unaware of any family history. Several people we talked to described how shocked they were to get the results saying their baby was a carrier, and some had not even fully realised that it was one of the things tested for in the heel prick. As one mother explained, in the early days after a difficult birth, she was not really focussed on the heel prick test.

Another mother was aware sickle cell was part of the heel prick test, but because she had previously been told she was not a carrier she never expected her children would be (see Interview 28, 'Carrier screening for other reasons').

As with carrier screening in pregnancy, people who were told their baby was a carrier were often worried at first that this meant there was a serious illness, until they talked to a counsellor who could explain to them that it would not affect the child's health. Some people found it hard to understand what the results really meant, or thought there might be a mistake. 

For some parents, English was not their first language and this could cause problems understanding the results. Technical terms can also make it hard to understand even for English-speaking parents: 'It's just gobbledygook, goes straight over your head, doesn't it?… Please explain it to me in a word, in a phrase that I can understand'. People generally found it easier to understand once they could talk to someone rather than reading it in a letter, and they liked the use of diagrams to help explain how the conditions can be inherited.

One mother had newborn screening in her first pregnancy in France, where she understood it was a routine part of maternity care. She had no carrier screening in pregnancy, and neither she nor her husband had any knowledge of a family history of sickle cell disorders. They were shocked to be told their baby had sickle cell anaemia.

You can hear more about how parents felt in 'Newborn screening - the effect on parents'.

For more information on the heel prick test and new born screening see the Public Health England's booklet on ‘Screening tests for you and your baby’ available from the GOV.UK website.

Last reviewed December 2018.
Last updated December 2018.


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