A mum in the UK has issued a heartbreaking plea to midwives and medical professionals around the world.
Sarah Roberts is mum to five-year-old Oscar, who was born with Down syndrome. Through her blog Don’t Be Sorry, Roberts raises awareness about Down syndrome and writes about her experience raising little Ozzie.
In a recent Facebook post, Roberts explained that she’d prefer midwives to say ‘chance of Down syndrome’ rather than ‘risk of Down syndrome’ when speaking to pregnant women and their partners at their 12 week scan.
In the post, Roberts explained that a friend of hers recently went for her 12 week scan and asked the midwife to use the word ‘chance’ rather than ‘risk’ when talking about her nuchal translucency scan.
“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'”, she wrote.
As Roberts explains when women have their first scan around 12 weeks, they also have bloods taken, as well as a measurement of the fluid behind the baby’s neck – and those combined results give them their ‘risk’ of having a baby with Down syndrome.
“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,” Roberts said.
According to Roberts when her friend requested the change in language, the midwife replied: “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,” and the sonographer reassured her she could “do something about it at 20 weeks” if she did find out that her baby had Down syndrome.
Roberts hopes her post will help to change people’s mindset and approach to Down syndrome, and the possibility of raising a child with the condition.
“It’s about changing people’s mindsets right? One person at a time,” she wrote. “Whether they work in health care 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 health care professional who may find this of interest/relevant. It’s about changing perceptions one small step at a time,” Roberts finished off her post.
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Distinguished Professor Caroline Homer, the President of the Australian College of Midwives, said this post highlights just how important language and terminology is.
“Many women find the word risk really problematic as it suggests something is wrong,” she told Mamamia.
“Risk is also in the eye of the person – what is a risk for some people may not be seen as a risk for others. Also, women and clinicians often perceive risk differently and that is the same between different health providers.”
Professor Homer said the ACM does not have a specific policy around this, but this post definitely, “highlights the importance of careful consideration about how we as midwives talk with women”.
“Using the word chance is much less value laden,” she said. “And just states what the chance is of something happening and then the individuals can work out for themselves what that means for them.”
What do you think of Sarah’s message?
Top Comments
thing is, it is a disability. It just is, and even more pertinent, it massively raises the risk for other serious health problems. Of course many people with downs go on to live happy, full lives, but it is a medical problem. It just is. Science isn't concerned with how a word feels to you. It just states facts and Downs is a genetic fault.
Your son is five and gorgeous and you clearly love and cherish him, which is great. I know various different families with dependents with the condition. The caregivers are in their 70's, the people with the condition are in their 30's-40's with no possibility of living completely independently, or of ever flying the nest. There is no end to being a hands-on parent or sibling caregiver in many instances. Where there is social care, that might be okay, but often there isn't, or it's inadequate. So while having a beautiful little child with a few challenges might not be a massive problem, by the time they've been diagnosed with severe, painful heart problems and turned into 40 year old adults with no possibility of an independent life, things might look different.
Medically, it is and will continue to be seen as a risk.
Most people don't know that you can choose not to have the 12 week scan. Before we fell pregnant, we decided that we would keep our child regardless of any chromosome differences. Our obstetrician tried to make us seem foolish and try to pressure us into it. However I know of more than one mum that has been told their child has a high chance of down syndrome, had so much stress and extra investigations only to find out the baby did not have any chromosome differences. So, if you have already decided that you will keep your child regardless, I urge you not to have the test!!
I agree completely. Wasting time and money on something that will not make any difference to your decision is only stressful and achieves very little.