‘There is no easy, painless, or single right way to tell parents their longed for baby has a serious condition suchas trisomy 13 or 18. Every baby is different, and generalisations such as ‘incompatible with life’ mean little when parents want to know how long the baby may live, and what will happen if the baby survives more than a few hours or days.’

‘Around 10% of babies with trisomy 13/18 survive for several months and some live for several years. All babies have severe developmental delay and the family need to know these possibilities and how they will be supported over this time. These issues are important to parents whose diagnosis is made during pregnancy when there is a need to consider termination or to support the family through adjusting for a baby with abnormalities. ‘

‘All parents appreciate factual information as early as possible, and if the person who first tells them a trisomy has been detected has only limited experience of the condition, they would rather this was admitted and access to more information offered. Any decisions need to be based on
 maximum knowledge and genuinely informed choice.’

‘There is usually time to share facts and debate the right decisions before planning intervention. Parents really need this time and resent feeling rushed into a decision before they are ready.’

Dr Una MacFadyen
Consultant Paediatrician and Medical Adviser to SOFT UK.