Many people described the decision to end a much-wanted pregnancy after being told their baby had a particular condition or disability as one of the most difficult decisions they had ever taken. Like most parents entering the antenatal screening process, they had never expected to find themselves in this situation, even if they had explicitly discussed beforehand what they might do in these circumstances.
Some people had previously thought they probably would end a pregnancy if they found themselves in this situation. This did not necessarily make it easier to take the decision in reality, and many commented how difficult it is to predict how you would react, especially if the seriousness of the baby's condition is uncertain.
Parents who had thought they would not consider termination found themselves revising their opinions. For one couple, knowing the baby would not survive was not in itself sufficient reason to end the pregnancy. The woman came from a strong Christian background and her parents had fostered children with disabilities.
They decided if the pregnancy would be all the baby would experience they wanted to make it as loving as possible. Their view changed only after they learnt that a baby with anencephaly had no sensation at all.
One woman described how she and her husband, who was brought up a Catholic, could hardly even begin a discussion that seemed so hard to reconcile with their values. They were relieved to find they agreed, but she was upset that the doctor they saw did not seem to realise how serious this decision was for them.
In reaching their decision, parents were trying to consider the baby's interests, the impact that a baby with disabilities would have on their relationship and their family, as well as whether they themselves could live with their decision and how others would react.
One couple visited a close relative who had a son with mild spina bifida to find out more about the condition. When they discovered their own baby had a more serious form of the condition they were clear that they did not want to see the baby suffer and at once decided to end the pregnancy.
The interests of other children in the family were also important for some people.
Discovering that their daughter had the most severe form of Turner's syndrome influenced another couple's decision. For them and many others it was important to take enough time to reflect before deciding, and not to feel rushed. (See also 'Thoughts, discussions and info after diagnosis').
Some conditions such as Edwards' syndrome are sometimes described as 'incompatible with life' - in other words the baby is very unlikely to survive. In such cases, the decision to end the pregnancy seemed inevitable to many parents. Even so, one couple felt they would have liked more sympathetic support and counselling in making their decision.
They would also have liked more information about the process of ending the pregnancy, and whether they could choose between surgical termination and termination by induced natural labour. Several people were shocked to discover they would have to go through a full labour.
Not everyone wanted detailed information about the process of ending a pregnancy before deciding, but many people did. (See also 'Thoughts, discussions and info after diagnosis' and 'The experience of ending a pregnancy').
Some people found it very useful to have the ARC (Antenatal Results and Choices) booklet about ending a pregnancy to help them decide. Others did not get it until after they had started the process, and some regretted that they only found out about ARC after they had left hospital.
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. The following is a quote from their report:
“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.”
“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.”
Last reviewed April 2012.
Last updated August 2010.