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Language Matters

SOFT UK Trustee Alison Pearson blogs for Public Health England
Alison was one of 2 mums asked by Public Health England Screening to talk about the importance of the language that health professionals use when communicating with parents and parents-to-be about conditions like Edwards’ syndrome.
Many women can repeat word for word what was said to them, even many years on, when their baby was identified, before or after birth, as having a genetic condition. It is therefore important for the professionals working in screening and diagnosis to get their language right.

Alison writes: 

Oh isn’t she gorgeous?

I am sure this is what midwives, nurses and doctors are trained to say about your new baby daughter, even if they don’t truly believe it.
In our early days with our gorgeous baby Isabel nobody said this to us. Not once.

Instead, the fact that she had a diagnosis of Edwards’ syndrome (trisomy 18) seemed to make it OK for a senior doctor to talk about her ‘dysmorphic features’ because her ears were set a little bit low: even 8½ years on I am still hurt by his blunt appraisal and lack of ability to talk about our beautiful daughter as if she were the important, loved human being she is rather than a medical specimen.

But worse was to come. In the days and weeks to follow her condition was called ‘lethal’, we were told it was not ‘appropriate’ to resuscitate Isabel should she suddenly deteriorate, and that this would be ‘her way of telling us she wants to die’.

Others with the same diagnosis have been told their child is ‘incompatible with life’ and are beyond hurt at this wholly inaccurate description, too often used as an excuse not to allow access to even basic medical interventions.

Isabel was, and is, a beautiful, loving, gorgeous little girl, full of life, and love. She is a human being – please honour and respect her, and us.
And do not isolate us even further at a time which is already so difficult.


Public Health England is doing a lot of work to improve the use of language and terminology in screening information and publications.  The national screening team in PHE really wants to help promote and champion the appropropriate use of lanuage to improve women's experience of antenatal screening.  

They report that this article has been their most read blog ever!  

Language and Genetic Conditions

The Down's Syndrome Association have created an impactful poster which gives helpful tips for more appropriate words and phrases when talking to families affected by a diagnosis of a genetic condition or syndrome. 

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