Ending a pregnancy for fetal abnormality

Looking for information and support

Parents who have been told the baby they are expecting has a serious problem usually need time to absorb the news. Parents felt well supported when health professionals gave them time to absorb the baby's diagnosis and what it might mean for the future, and also when they were encouraged to talk about what their options were and what they might want to do.       

However some parents left hospital feeling that they hadn't really understood what doctors told them because they were 'in shock', and yet they felt they needed to know more about the baby's problems before they could decide what to do next. 

Many people found support groups a helpful source of information and support (see 'Support groups') and some were given leaflets about support groups by hospital staff, others were not and searched for more information by themselves. 

Almost everyone we interviewed who ended a pregnancy during the last 5 years used the internet to find out more about the baby's condition - 'you become an anorak' one woman said because 'you want to be sure you've looked at every single avenue'. 

Most people used the internet to find support groups like ARC (see 'Resources') where they could find out more about ending a pregnancy, as well as groups like Little Heart Matters where they could find out more about the baby's condition. (See 'Support groups'.) 

The internet also led people to US websites which showed parents who had kept their babies and were still caring for them at home. People responded differently to these sites - several found them useful, others had reservations about them. 

A few people got lost on the internet, ending up on specialist scientific sites they couldn't understand or that weren't relevant for their baby. One man said he worried that his wife used the internet compulsively to search for positive stories when he felt she should accept nothing could be done for the baby.

A few women were grateful that doctors had searched the internet for them, particularly when the baby's condition was so rare that little research had been published and there was no relevant support group. For those expecting a baby with an inherited disorder, genetic counsellors and specialist nurses were said to have provided invaluable advice and support. 

People often needed different kinds of information and support at different times - for example several people lost confidence in their decision when they read or heard misleading stories in the media.

Some people felt they already knew enough about the baby's diagnosis because of their nursing or caring experiences to make an informed decision. Others said it was helpful to get more directive advice from friends and family with medical expertise who were not involved in their care. 

The Royal College of Obstetricians and Gynaecologists (RCOG) have produced a report on ‘Termination of Pregnancy for Fetal Abnormality in England, Scotland and Wales’ (May 2010).  Within it are a number of recommendations for the counselling and support of women after a diagnosis of fetal abnormality. The following is a quote from their report:

The decision-making process for women and their partners after the diagnosis of fetal abnormality is a difficult one. They must try to absorb the medical information they have been given, while in a state of emotional shock and distress, and work out a way forward that they can best live with. In such sensitive circumstances, women and their partners must receive appropriate counselling and support from the healthcare practitioners involved. All staff involved in the care of a woman or couple facing a possible termination of pregnancy must adopt a nondirective, non-judgemental and supportive approach. The use of appropriate literature and the availability of help from non-directive external agencies, such as Antenatal Results and Choices, is extremely helpful.

After the diagnosis, the woman will need help to understand and explore the issues and options that are open to her and be given the time she needs to decide how to proceed. She must not feel pressurised to make a quick decision but, once a decision has been, made the procedure should be organised with minimal delay. Although usually there will be no time pressure put on her decision making, there may be occasions when the pregnancy is approaching 24 weeks of gestation when, because of existing legislation, a rapid decision will have to be reached. In this instance, the reasons must be sensitively outlined and the added distress this may cause acknowledged.”

Last reviewed June 2014.
Last updated June 2014.

Feedback

Please use the form below to tell us what you think of the site. We’d love to hear about how we’ve helped you, how we could improve or if you have found something that’s broken on the site.

Make a Donation to healthtalk.org





Find out more about how you can help us.

Send to a friend

Simply fill out this form and we'll send them an email