Ending a pregnancy for fetal abnormality

Understanding the baby's diagnosis

For most parents, reaching an understanding of the baby's problems meant accepting what one woman described as 'the worst news possible'. Many parents found they were so overwhelmed by hearing that the baby had a problem that they couldn't absorb much detail about the diagnosis, and needed more time to think it through on their own. Others said they found themselves listening, but felt frozen in time, and simply didn't know what to do next. 

Some women said their first reaction had been an irrational guilt for having 'done something wrong'. Others said that the whole situation felt 'unreal', and that they couldn't believe the diagnosis really applied to their babies. Several women said that their partners didn't seem to have absorbed what the diagnosis meant and had taken longer to grasp what the long-term implications were for the baby.

Parents' understanding of the baby's problems was affected by several things - whether they had ever heard of the condition before or knew anything about it, whether they knew anyone with the condition in question, and whether there was effective communication with those caring for them. (For more details about how knowing about the condition beforehand could affect parents' decisions see 'Deciding to end the pregnancy for family and personal reasons'.) 

Several people said that once the reality of the baby's problems hit home, they began to listen more carefully to what health professionals were saying and how they presented information. Several people recalled how doctors had repeated certain key phrases about the baby which had stayed with them as they thought about what they would do next. Several people looked back on the first consultations and wondered if the baby's diagnosis could have been presented differently. 

Several people vividly recalled consultations where a particular health professional seemed to identify with them and had acknowledged the enormity of the problems they were facing. Many people appreciated doctors speaking clearly and taking the trouble to explain the baby's problems using diagrams and pictures. Some found they understood the baby's problems better when health professionals explained things in everyday language rather than medical jargon.

The words and language used by health professionals to describe the baby could be important because they helped to set the tone of consultations. Several people said the words 'fetus' (as opposed to 'baby') and 'abnormality' (as opposed to 'problem') had alienated them. Some found it difficult when health professional used clinical language to describe the baby and found it created distance between them. 

People were also affected by the atmosphere of the place where they first realised how serious the baby's problems were. Some who were sent to specialist centres for more scans and diagnostic tests felt that staff seemed 'more professional' than in local hospitals - but other people felt quite the opposite and said they preferred being in the local hospital. Some couples who attended specialist centres a long way from home found that travelling to the hospital made them anxious and tense before consultations began. 

Almost everyone remembered how the baby's diagnosis had been made in the 'bad news' room (usually equipped with tissues and magazines). One woman referred to it 'as the outcasts' room' and would have appreciated having something useful to read. 

Though some parents valued empathy and sensitivity from health professionals at this time, others liked a matter-of-fact approach, and several men said they valued doctors being 'straight' with them about the baby's problems. Many parents said they understood that health professionals could not make decisions for them or tell them what they should do, but several valued doctors who had helped them think about life with the baby in future, in the context of home and family. 

Last reviewed July 2017.


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