Antenatal Screening

Thoughts, discussions and info after diagnosis

Once parents discover their baby has a particular condition, they have to decide whether to continue with the pregnancy or end it. They may have already started to decide, individually or together, or they may have postponed discussions till now. Several people said how difficult it was to even start the discussion.

Most parents felt they needed:

  • information about the condition itself and how severely their child would be affected
  • information about what would be involved in a termination
  • help in understanding the information
  • time to reflect and accept the reality of the situation
  • acknowledgement from staff that this was a serious and often difficult decision

Healthcare staff face a difficult task in judging how much detail they should go into for different individuals, when to offer which kinds of information and how much time and support different people need. For example, one woman felt the hospital was very sensitive by first of all providing information about the condition, giving her time to think overnight, and then introducing the possibility of termination the next day.

Another felt she was given excellent information by a very caring midwife about both the condition and the process of termination, but it might have been better to take more time to absorb what she had been told. She also suggested this kind of detail could be part of informing people about screening at a much earlier stage.

By contrast, a mother whose baby had Edwards' syndrome felt very well advised to take time to reflect, but found most of the information about the condition herself on the Internet. She was not given the ARC (Antenatal Results and Choices) booklet about deciding whether to end the pregnancy until after she had taken the first tablets to start the process.

The Internet proved invaluable for many people, although some people commented on the problem of finding reliable sites, and were concerned for others who might not have access to the Internet. One father felt it helped them identify the right questions to ask, and their doctors had always responded honestly.

Some people felt strongly they had not been given enough information about their baby's condition to make their decision. Although one mother knew her baby had anencephaly (a condition where the baby's brain has not formed), she did not understand at first that this meant, and this was not helped by how dazed and exhausted she felt.

After talking to two charitable support groups and being put in touch with a very helpful consultant in another part of the country, she felt well informed, but thought her local hospital could have done more to ensure she understood. The new information changed her mind and she decided not to continue with the pregnancy.

The leaflet by Public Health England ‘Screening tests for you and your baby’ should be given to all pregnant women by their midwife or GP and lists appropriate support groups for further information.

Charitable support groups were vital for many people, both those giving information about making choices after screening such as ARC, and charities focused on specific conditions.

Some people thought too much information about the condition would be unnecessarily frightening. Some hospitals had offered to put people in touch with other parents who had a baby with that condition. One mother who was offered this felt it would put her under pressure to continue the pregnancy, so she did not take it up. Some people thought this might happen with charitable support groups too. Perhaps for this reason, other hospitals did not offer to arrange contacts with other parents or advised against it.

Some parents made their own contacts with other families and people with disabilities and in some cases drew on their own past experiences. This couple also commented that just as a cardiologist explains what a heart condition will involve, a 'Downsologist' would be useful who could explain what to expect with Down's syndrome.

Even with a firm diagnosis, it may be impossible to give parents as much information as they would like about the severity of the condition. This is especially true of conditions such as Down's syndrome, in which the level of disability and health problems varies widely.

Feelings were also mixed about how much information people wanted about having a termination. Most people felt it was important to have as much detail as possible to make a truly informed decision, and in some cases felt the information had been too little or too late.

On the other hand, one woman (who ended a pregnancy at 23 weeks) felt too much information at an early stage might have deterred her from having a termination. She suggested a more structured process for guiding people in steps through the decision, with built-in time for reflection at each stage.

In many of the examples given above, parents were advised by helpful and sensitive staff. People needed to feel that staff acknowledged that this was a momentous decision with long-term consequences. Where this did not happen, it could be distressing.

To hear more about how parents resolved their discussions see 'Making the decision to continue with the pregnancy' and 'Making the decision to end the pregnancy'.

See also the 'Resources and Information' section of our website.

For more information see our website on Ending a pregnancy due to fetal abnormality.

Last reviewed July 2017.
Last updated July 2017.

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