Antenatal Screening

Making the decision to continue with the pregnancy

Parents who decided to go ahead with a pregnancy knowing the baby would have health problems or disabilities described the decision-making process they went through. (See Healthtalk site on 'Parents of Children with Congenital Heart Disease', some of whose comments are included here).

Some people had to think carefully whether they would want to end the pregnancy, while others never had any doubt that they would continue. Most people thought it was right to be offered information about termination, as each person has to make the decision that is right for them and their family. Most felt under no pressure either way.

One woman said she had been put under pressure to end the pregnancy, but at 8 months it was simply too late for her to consider, however poor the outlook was. Several others also said they just could not contemplate termination because they felt it was too late in pregnancy, especially if they could already feel the baby move.

Very occasionally people found it offensive that the option of termination was even offered, and several found it distressing to think about the choices. A couple expecting a baby with Down's syndrome had also been told about adoption, which they would not have chosen, but thought it was useful information.

One woman felt the doctors gave her very little hope because the baby's heart condition was so serious, and was told 50% of parents would choose a termination. She described how she made herself think through all her different options, and how none of them seemed bearable.

Although her medical care was excellent, she would have liked more support in thinking through her decision. Like many people, she found help from a charitable support group for parents of children with hypoplastic left heart, although she acknowledged that support groups may unintentionally steer you in a particular direction, however hard they try to remain neutral.

Clearly the nature of the diagnosis has an impact on the decision, and the extent to which the condition is treatable was also important for some people. Although heart scans may not reveal the full extent of the condition, a number of people said that while there was hope their child might be treated they wanted to go ahead.

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This man's wife described how they thought through explicitly what their reaction would be to different diagnoses and what the impact would be on their wider family. Given their history of miscarriages they were concerned this might be their last chance to have a baby so they really wanted to go ahead, but did not feel they could cope with a baby with a chromosomal condition.

In making their decision, parents were trying to weigh up the interests of their baby and giving him or her the best possible chance, as well as what was best for them as a family.

Whilst some people felt they could not cope with a condition that would probably be untreatable, others felt differently. One couple whose baby had Down's syndrome and a heart problem felt they would want to continue with the pregnancy unless they felt the baby could not give and receive love, or if his heart condition had been inoperable.

Another couple were told their baby had a serious chromosomal condition called Patau's syndrome, and was very unlikely to live for very long. Although they continued to hope during pregnancy that he might live longer than predicted, they knew his chances were not good. They described how their decision to continue with the pregnancy was based on both the baby's interests and their own long-term need to know they did everything they could. It was a relief to decide to let nature take its course, but also a time of grieving for the healthy baby they knew they were no longer going to have.

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'

‘All staff involved in the care of a woman or couple facing a possible termination of pregnancy must adopt a non-directive, non-judgemental and supportive approach (section 6).

It should not be assumed that, even in the presence of an obviously fatal fetal condition such as anencephaly, a woman will choose to have a termination. A decision to decline the offer of termination must be fully supported (section 6).’

Last reviewed June 2014.
Last updated August 2010.

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