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.
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.
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.”
This article first published on Marie Claire.