Mum of boy with Down Syndrome's powerful post

This Mum‘s Post About Her Baby With Down Syndrome Is Going Viral

Sarah Roberts

When Sarah Roberts posted to her Facebook page yesterday, she had no idea the reaction would be so huge: in under 24 hours, the post had generated over 7900 likes, 630 comments and 1700 shares.

It’s struck a chord worldwide for one simple reason: Sarah has identified a seemingly straightforward medical convention that she says has the potential to be incredibly harmful to women and their children.

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

“I've often been puzzled by the use of the word "RISK",” Sarah writes. “For If you look up the word risk in the dictionary, it says "a situation involving exposure to danger".

“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.

Don't Be Sorry

Sarah has a four-year-old son, Oscar, with Down Syndrome (pictured above at 11 months), and seeks to change the language medical professionals and the broader community use when discussing the condition. She started a blog, Don’t Be Sorry, documenting her family’s normal life (she and her husband Chris have two more children, son Alfie and daughter Flo) in 2014.

Since publishing the post, Sarah has been contacted by midwives, sonographers, paediatricians and obstetricians to say they will change the language they use to discuss Down Syndrome with parents.

“I am a midwife and had never reflected upon the use of this language,” one comment reads. “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 ds have higher risk of certain health issues, you are completely correct.”

“I’m a community midwife and have recently swapped the phrase ‘not compatible with life’ for ‘life limiting’ due to a similar story I read,” writes another.

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....

Anyone scrolling through Sarah’s Facebook page or Instagram feed would be immediately struck by just how wrong such labels are for a little boy like Oscar and children like him.

On her Facebook page, Sarah shares how her own perspective on Down Syndrome has changed since having a baby with the condition. “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 was a broken woman 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 now realise having Oscar has been the making of our family... He's the little boy who inspires me every day.”

You can read Sarah’s full post (and follow-up post) here.

This article first published on Marie Claire.