Intended for healthcare professionals

Practice What Your Patient is Thinking

Never say never about our child

BMJ 2015; 350 doi: https://doi.org/10.1136/bmj.h1246 (Published 06 May 2015) Cite this as: BMJ 2015;350:h1246
  1. Alison Pearson

In the latest of a monthly series in which patients and carers set the learning outcomes for readers, Alison Pearson asks healthcare staff to reconsider the concept of offering “false hope.” For more information about the series, contact Rosamund Snow, patient editor, rsnow@bmj.com

Until five years ago we were just an ordinary family, with a 3 year old son and a baby on the way. The baby became our daughter Isabel, who is a loving, happy, beautiful little girl much loved by her family and friends.

What makes us a little less ordinary now is that Isabel has Edward’s syndrome—she has an extra copy of chromosome 18. The way that medical professionals have responded to this fact has had a major impact on us, in both negative and positive ways. We are lucky; local paediatric doctors treat her as a valued child and focus on her symptoms rather than her syndrome. But we have had some unnecessarily difficult experiences with others, especially in the early days.

Three days after Isabel was born we were given her diagnosis, devastating enough to deal with but made even worse by the fact that it felt as if some of the doctors had stopped viewing her as a child worth …

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