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A Parent writes in the BMJ


kbarrington

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Published recently, a brief article by a parent of a child with trisomy 18. Please read it, it won't take more than a few minutes, but it could make a difference to how you interact with the next parent who has a baby with a serious condition.

I hope Alison Pearson and the BMJ won't mind if I give you a taste of her advice to medical staff, in case the article isn't freely available everywhere. I have shortened and edited her 'bottom line' but, if you have access, the longer complete versions are worth reading and taking to heart.

  • Be aware of your ability to create self fulfilling prophecies. It is easy to limit a child’s chances by being pessimistic about what they will or won’t be able to do in the future.
  • If you need to ask about a 'do not resuscitate' decision, discuss it once and then record the response. It is definitely not a “tick box” question to be asked routinely at every admission.
  • Don't try to destroy a family's hope. There is no such thing as “false hope” whether or not it comes true, it can help today to be manageable
  • Remember that parents need help too, not just babies and children. It helps when healthcare workers treat our children as though they will recover, rather than assuming that they won’t.
  • Acknowledge that our children are beautiful, happy, and much loved; be pleased by their progress, and give us good news, as well as bad.
  • Using terms such as “dysmorphic features” and a “lethal condition,” as well as talking about her “end of life pathway” in front of our children and their siblings is simply not respectful. Think carefully about the words you choose to describe children to their parents, and in the presence of siblings.

At the end of the article , there is a link to the parent's blog. Their latest post is a musing about the answer to the question "what is life all about?" It is very profound, and very simple at the same time, certainly worth reading.

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