Antenatal Screening

How it has affected parents' views about antenatal screening

All the parents we spoke to who discovered after birth that something was wrong had had antenatal screening, and been given low risk results (see also 'Learning after birth that the baby has a condition'). Here they discuss how their experiences have affected their views about screening.

Looking back, the mother of a little girl with Down's syndrome now felt screening was pointless because it only gave a probability or risk, not a definite diagnosis.

As she turned out to be the one person in thousands who did have an affected pregnancy the statistics seemed meaningless to her. She had concerns about social pressures towards choice and perfection, and pointed out that screening cannot detect many conditions which are more serious or life-threatening than Down's syndrome. 

This mother felt it would be very hard to decide what to do about screening and testing in a future pregnancy. She would find it difficult to contemplate ending the pregnancy if she found she was having another baby with Down's syndrome, but to have another baby with a disability would have major implications for the rest of the family, particularly her older son. For this reason, she felt she would rather not plan any more pregnancies.

However, she was concerned about negative images of Down's syndrome in the media, and questioned whether people who discover before birth that their baby has Down's syndrome receive balanced information. 

It might be helpful for people to speak to other parents about what life is like with a baby with Down's syndrome, though parents will also find it hard to be neutral in what they say.

Information about the condition and about what support would be available was also a concern for a mother whose baby was born with hydrocephalus (fluid on the brain). After birth she was told the outlook for her daughter was much worse than it has since turned out, and she wondered how she would have felt if she had been told this before birth. 

She described mixed emotions of guilt that she must have done something wrong and anger that the problem was not picked up sooner. She felt earlier intervention might have limited the extent of her daughter's brain damage. 

The mother recognised that not all problems can be detected at a 20-week scan, but felt this was a reason to make more screening available later in pregnancy, even though in her case scans at 32 and 38 weeks had not detected the hydrocephalus.

The parents of a little girl born with congenital heart problems were told by one doctor at the specialist hospital they were referred to, that her condition should have been detected at the 20-week scan.

The mother would like to have a specialist review the pictures from her 20-week scan, to know definitely whether or not it could have been picked up.

Both parents in fact felt glad that they had not known beforehand, as it would have made pregnancy an anxious rather than enjoyable time. The mother also thought she might have felt pressured into thinking about a termination.

At the same time, she knew it could be important for the baby's health to know in advance, and another time might want to find out. 

This view was echoed by a mother interviewed for our site on parents of children with congenital heart defects when she discussed a second pregnancy after her first child was born with undiagnosed heart problems.

Last reviewed July 2017.


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