Mum of son with Down’s syndrome urges doctors to change how they speak about condition

A mummy blogger whose son has Down’s Syndrome has called for medical professionals to change the way they speak about the condition to expectant mothers.

Sarah Roberts, of Woking, Surrey, started the blog Don’t Be Sorry, following the birth of her son, Oscar, now five, in a bid to record “the ups and downs of having a child who happens to have Down’s Syndrome.”

But, tired of medical conventions surrounding the condition the mother-of-three took to Facebook with a post which has now been shared thousands of times. 

She begins by recounting a recent conversation with a friend, who had asked her midwife to use the word ‘change’ instead of ‘risk’ when explaining the results of her 12-week tests.

“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's Syndrome,” Roberts wrote.

“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.”

Her candid post, which was accompanied by a picture of Oscar, clearly struck a chord as it received more than 4,000 shares and 1,000 comments in a matter of days. 

But, more importantly it started the exact conversation that Roberts had hoped for with medical professionals from around the world pledging to change the way they speak about Down’s Syndrome to pregnant mothers.

 

BLOWN AWAY by the response to my post about "chance" v's "risk" that I put up last night. I've had something like 5.5k likes, 1000+ shares, 650 comments and it's been seen on 400,000+ people's time lines. Crazy stuff!!!!! What has made me happiest about it though, is that I've had comments and private messages from so many healthcare professionals - Midwives, Sonographers, Paediatricians, Obs and Gynae etc all of whom have said they will be more mindful of their use of language and the way they approach it in the future ❤️ For me, changing the terminology at the start of a woman's pregnancy journey, (e.g by saying there's a 1 in 4000 chance you'll have a baby with DS v's a 1: 4000 risk of having a baby with DS), hopefully will mean the women receiving the information, won't feel nearly so alarmed. Of course there's so much more to be done in terms of health care professionals giving that expectant mother balanced information about what having a baby with Down Syndrome really means as apposed to what she might be thinking it means. (Let's face it so many of us have preconceived ideas about stuff before we really go out of our way to understand something) but this is definitely a start On that note though, If health care professionals can be balanced and informative about DS, i'm sure women would feel a sense of support rather than pushed into making a decision before really knowing the facts. Send new mums and dads in the direction of local support groups, make sure your leaflets are up to date and positive. Send them over to blogs like mine to give them the opportunity to see the truth. That we're just a very normal family, leading a pretty average life. Tell them to reach out to their local communities - they may see then that our kids are integrated into mainstream schools, local dance groups, attend the cubs and rainbows... show them Down Syndrome for what it is now, not what it was. It's only then they can make a decision about what they want to do, based on reality and what they've seen, not outdated opinions. That's all I ask. CONTINUED IN COMMENTS....

A post shared by Sarah Roberts (@dontbesorry2) on Jul 4, 2017 at 11:05am PDT

“I am a doctor. I have never really thought about it like that before. I will now use the word chance instead after reading this. Thank you,” one person wrote. 

Another added, “As a nurse who works in private industry your post has certainly got me thinking. 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.”

 

An introduction... I'm Sarah, married to Chris and Mum to three little ones - Oscar, Alfie and Flo. I think for the most part we look like your average family of 5. Having danced for a living, I've since found my passion in writing. Chris, works in the city as a banker (promise he's not a w#%*$r though 😉) and loves rugby and cycling. Oscar our eldest, is an avid fan of Justin Fletcher and a whiz on the scooter. Alfie, partial to the odd biscuit or 10 🙄 adores Dinosaurs and Flo can be found most days, pushing her "bebee" (baby) around in her buggy or dancing to the Peppa Pig theme tune. Not altogether different to your family you might think?... except Oscar, my eldest at 4 years old, has Down Syndrome. We hadn't known about the Down Syndrome before he was born and despite having the screening and it coming back as "low risk", (despise the word "risk"... "chance" is a lot better surely?) it appeared Oscar and his Down Syndrome, had slipped through the net. If I'm completely honest (which I've always vowed to be on here) I was devastated. When the paediatrician told us she was sorry, she suspected our baby had Down Syndrome, I genuinely thought my world had ended. I think before Oscar, I naively thought that "bad stuff" didn't happen to people like me. You see, that was my attitude then. The "bad stuff" I was referring to was the Down Syndrome, which in hindsight, 4 years on, is so far removed from what I think now. I was a broken women in the beginning, spending hours a day worrying about Oscar's future, our future as a family and what it meant having him in it. I worried about how he'd cope, how we'd cope...I worried a lot at first. But 4 years down the line, I've realised I don't worry nearly half as much. In fact I now realise having Oscar has been the making of our family... He's the little boy who inspires me everyday. So I decided to start writing a blog back in January 2014 and what started as a bit of an outlet for me, somewhere to write down my thoughts and feelings, an online therapy of sorts, has since turned into an award winning blog which I'm told has helped "new" parents going through something similar. Continued in comments

A post shared by Sarah Roberts (@dontbesorry2) on Mar 25, 2017 at 12:31am PDT

Overwhelmed by the huge response, Roberts reacted with another post to thank people for their support. 

“BLOWN AWAY by the response to my post about “chance” v's “risk” that I put up last night,” she said.

“What has made me happiest about it though, is that I've had comments and private messages from so many healthcare professionals... all of whom have said they will be more mindful of their use of language and the way they approach it in the future.”

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