Is it time to stop saying ‘risk’ when it comes to Down’s syndrome?

"Last time I looked, having Oscar hasn't exposed me or anyone else to danger"

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As part of NHS care, all pregnant women are offered the chance to have a test at around 12 weeks which will reveal the likelihood of their little one having Down’s syndrome – and now mum Sarah Roberts is challenging the way those results are shared.

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On her Facebook page, Don’t Be Sorry, the mum of 5-year-old Oscar has shared the story of a friend who was told about the ‘risk’ of her baby having Down’s syndrome – and makes her petition for this type of language to stop.

Sarah’s post 

“A friend of mine, whose just announced she’s pregnant, sent me a photo of her scan picture the other day.

“Underneath it she wrote, “Due early next year… P.S I asked my midwife to please use the word chance not risk when talking about my nuchal scan 

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? “

“Now anyone who has been following our page for a while, will know that I have been known to get on my high horse about the word ‘risk’.

“When women go for their scan around 12 weeks, bloods are taken as well as a measurement of the fluid behind the babies neck and from those combined results, they’re given their ‘risk’ of having a baby with Down Syndrome [sic], e.g, the risk of you having a baby with Down Syndrome is 1:10,000 for example.

“While I understand a lot of women want to screen or indeed go on to have further testing (whether it be the new NIPT or amniocentesis) I’ve often been puzzled by the use of the word ‘RISK’. For if you look up the word risk in the dictionary, it says: ‘a situation involving exposure to danger’.

“The reason I’ve been known to talk about this on here before, is because last time I looked, having Oscar hasn’t exposed me or anyone else to danger. Quite the opposite. So I (along with a lot of other parents of kids with DS) feel that “chance” would be a much better use of language.

“The chance of you having a baby with DS is 1:10,000”

“See, much better ? 

“Anyway I was intrigued to know what the response had been from the midwife that day. And this was my friend’s reply:

“So I said it to both the midwife and the sonogropher. MW apologised and said: ‘Of course. I’m so sorry, we don’t mean to offend. I’ll make a note on your file that this is a sensitive issue for you. Hahahaha!!!! (In other words – we’ve got a tricky one here!) and the sonogropher said: ‘But it’s a risk assessment. We mean risk because it is a risk,’ and I said: “No it’s not – it’s a chance.’

“… What I loved about this wasn’t the responses. Who knows if the midwife will take any of what my friend said away with her?

“Perhaps she’ll be more mindful of her language next time… or perhaps she just thought my friend was being over sensitive about it all.

“It’s about changing people’s mindsets, right? One person at a time. Whether they work in healthcare or whether they’re someone like you or I who perhaps didn’t have the knowledge and understanding before.

“Please feel free to tag a consultant, midwife, paediatrician, sonographer or any other healthcare professional who may find this of interest/relevant. It’s about changing perceptions one small step at a time.”

The reaction

Sarah’s post has had more than 21,000 reactions and more than 5,000 shares. A lot of response has come from healthcare professionals who totally get what Sarah’s trying to do, like this:

“Thank you so much for writing this. I am a midwife and had never reflected upon the use of this language.

“It’s an emotive word and it’s one I always need to explain, ‘chance’ would be far easier for people to understand and whilst children with Down’s syndrome have higher risk of certain health issues you are completely correct.”

Another wrote: “I qualify as a midwife next month and this will stick with me.

“The words we use are very powerful to families during such a transformative time of their lives and we should always remember that.”

And yet another said: “As a nurse who works in private industry (and sadly no chance of anything as wonderful as babies) your post has certainly got me thinking.

“‘Risk’ is such a powerful and hard word that contains no joy or compassion. I like to think that I don’t use words that frighten our employees – but your post has definitely made me consider what words I will choose in the future.

“Your words will resonate with health professionals from all aspects of health.”

Wow, it really sounds as though Sarah’s campaign could make a real difference for mums-to-be and those who care for them. Powerful stuff ✊

What do you think?

Do you agree with Sarah that it’s time to stop using the word ‘risk when it comes to talking about Down’s syndrome? Tell us in the comments below or over on Facebook

Image: Sarah Roberts/Don’t Be Sorry on Facebook

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