Antenatal Screening

Learning after birth that the baby has a condition

Some women we spoke to had gone through pregnancy with normal or low risk screening results, but then discovered after birth that the baby had a particular condition or disability. 

One mother was told after her nuchal scan that her risk of having a baby with Down's syndrome was 1 in 1700 (see also 'Understanding antenatal screening test results'). 

She described how she and her husband suspected after the birth that the baby did have Down's syndrome, but it took two weeks to get definite confirmation.

The delay in diagnosis turned out to be a positive advantage, because it gave them time to get to know the baby as a person and adjust gradually to what they thought might be wrong. 

Having a home delivery also meant they did not immediately get drawn into medical diagnosis and intervention, and could work on establishing breastfeeding. They were relieved to discover the baby had none of the heart defects which often accompany Down's syndrome.

This contrasted with the experience of a mother whose baby was found to have hydrocephalus (fluid on the brain) immediately after birth. The problem had not been visible at the 20-week scan, nor was it detected at a scan at 32 weeks. She had a scan at 38 weeks to check the baby's position, and thinking back the mother thought the baby looked strange at that scan.

Immediately after a long and difficult labour it became apparent that something was wrong.

The next day the neurologist gave them the results of a brain scan which suggested the baby had severe brain damage. 

Coming to terms with the shock of this unexpected news was very hard, especially seeing other mothers in hospital with normal babies. In fact their daughter's progress has since been much better than predicted.

Another little girl had several problems after the birth before a congenital heart condition was finally diagnosed. Even in hospital straight after the birth her parents felt uneasy, but were reassured there was nothing seriously wrong. Eventually they took her to hospital and it was discovered the level of oxygen in her blood was low but this was put down to pneumonia.

Although one doctor mentioned the possibility of a heart problem, they did not see the same doctor again and it was not followed up. After several days, her oxygen levels dipped suddenly and they were sent to a specialist hospital. It was terrifying to be caught up in a life-threatening emergency, but also a relief to finally have a diagnosis.

After the first hospital stay, they were back a fortnight later, and described their sense of helplessness watching their baby struggle for life. Their daughter has since been operated on successfully and is doing well.

Being told there is something wrong with your baby will always be upsetting, whether it is before the birth or after. These parents had mixed views about whether they would have preferred to find out before birth. 

See also 'How it has affected parents views about screening' for their thoughts about screening and antenatal diagnosis.

You can find more parents talking about their experiences of having a baby with a long term health condition on the following our sites: 'Screening for sickle cell and beta thalassaemia and other haemoglobin variants' and 'Parents of children with congenital heart disease'.

Last reviewed July 2017.


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