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Sarah Roberts is a mother who is working to change the language health professionals use when talking about babies with chromosomal conditions. It’s a subject she feels passionate about because of her experiences when she had her son Oscar, who has Down’s Syndrome.  She writes a blog called ‘Don’t be Sorry’ about her family and met the Your Pregnancy Doctor team to share her thoughts.

Language is one of the important ways with which we communicate, make ourselves understood and get our thoughts across. So, the words we choose can have an enormous impact on the way others understand us. This is particularly important when it comes to matters of health. As medical students and doctors in training we spend time learning the ‘best’ ways of breaking news to patients, however I recently met with a woman who made me rethink the words we use.

Sarah Roberts is a loving mother with three gorgeous children. Oscar, her oldest son, was diagnosed with Down’s Syndrome shortly after birth. At the time, Sarah responded with understandable shock, sadness and grief – but she believes that the way in which the news was shared had a huge effect on the way she felt about the birth and about her baby.

‘When we had Oscar, the paediatrician told my husband and I that he had a diagnosis of Down Syndrome. The first thing she said was that she was “So sorry”.Her demeanor, her body language, everything projected to us that, for her, this news was the worst news imaginable. I fully appreciate that she was probably thinking that this hadn’t been what we were expecting, and she’d be right about that, but I literally felt like she was telling me someone had died.’

A Mother's Journey - Down's Syndrome

The couple were told the news twenty minutes after Sarah woke from a general anaesthetic for an emergency Caesarean section. It was two o’clock in the morning and the ward was dark. Sarah says that she wishes the staff had waited until the morning, when she had slept and recovered a little from the effects of the anaesthetic and the operation: ‘Everything always feels better in the morning, doesn’t it? Instead, she told us what they suspected, then left us to try and get some sleep!’

Sarah feels strongly that the way the professionals feel about Down’s Syndrome, or the ways they expect parents to respond, shouldn’t affect the way the information is delivered. Sarah would have liked the paediatrician to have opened the conversation with“Congratulations you have a beautiful baby boy. The news I’m about to tell you won’t be what you were expecting but please don’t panic. We’ll support you and point you in the right direction of those that can help. This isn’t the end of the world.”

It’s the same news, but such a different way of getting it across. And maybe more helpful too, because for the Roberts, far from being the end of the world, having Oscar has been the start of building a happy and loving family.

Sarah reflects:

Looking back, I don’t understand the negativity. Although having Oscar has had its challenges at times, sorry is the last thing I feel. Yes, we’ve had to fight for the right support and provision in school and yes the milestones he’s hit have been a little later than his brother and sister. But I still have the same hopes and aspirations for Oscar as I do for my other two. I still worry about them all in the same way. Having Oscar has opened my life up to a whole new world. New experiences, new friends and a new way of looking at things. Now he’s here, I wouldn’t have it any other way, we have a pretty lovely life.’

The Power of Language

Sarah is working to spread the message that language matters. She has a wonderful blog, aptly entitled Don’t Be Sorry and also visits hospitals and practices to talk to doctors and midwives. She wants people to consider the words they use when delivering any type of diagnosis. By changing terminology, we can also change perception. As a doctor who regularly has to talk to parents about scan results and screening tests, it has made me think again about the way I share this news. But how have other health-professional responded?

It’s been so lovely to hear that if nothing else, my talks have made them think. How Am I delivering news like that? Am I subconsciously projecting how I’d feel? I think mostly people are willing to change.  But, the other day, a gentleman said that in medical school they’re taught that when delivering any news that might be deemed “unexpected” for example cancer or a brain tumour, they’re told to say “they’re sorry”.  

‘I thought about his words, and while I understood what he was saying, he was putting Down’s Syndrome in the same category as having cancer or a brain tumour. But DS isn’t a disease, it isn’t an illness, it’s a condition- and people like Oscar can lead very full and happy lives regardless of their condition.’

Risk or chance?

One of the things that Sarah is trying to change is the terminology around screening tests. Currently we use the term risk when it comes to screening tests. You’ll have heard it in appointments and throughout the articles on Your Pregnancy Doctor. In fact, on our page about screening tests we say: ‘The idea of risk can be tricky to understand. It really refers to the chance of something happening. So, you’ll be given a risk of, say, 1 in 100. This means that for every hundred women who had this test result, only one would have a baby affected by Down’s. The other 99 babies would be unaffected’. But as Sarah says‘When you look up the word risk, it means “something that exposes you to danger.’ She adds that‘Ninety per cent of women who find out they’re expecting a baby with Down’s Syndrome prenatally, are choosing to abort. That’s really high. And I often wonder why that is? I believe it’s down to fear. Fear of the unknown and perhaps a general feeling that we think we know what it means to have a child with DS. I think that the word risk could be triggering that fear. I’m asking consultants, midwives and sonographers to change it to “chance”. You have a one in a hundred chance of having a baby with Down’s sounds so much less scary’

When it comes to screening, chance and risk can mean exactly the same thing, but this slight change in wording could really affect the way screening results are perceived by parents. With a chromosomal condition, termination is not the only option, by understanding more about the condition and how people live with it, it is easier to make an informed decision about your family’s future. As older parents, it’s something we had to consider when we had our daughter Poppy. We thought long and hard about what tests to have, balancing the risks (and I do mean risk, because I’m talking about the dangers associated with amniocentesis) in our own personal circumstances. Every couple is different. Sharon and I decided not to have any diagnostic tests because we wanted a child, and would look after her, even if there were a possibility of Down’s syndrome. At the time of Poppy’s birth, I didn’t know whether she would have a chromosomal condition or not but as soon as she emerged, it didn’t matter.

Sarah adds ‘I am pro-choice and respect that fact that everyone has the right to choose. But I ask that they make that decision based on how it actually is to live with Down’s Syndrome in this day and age, rather than what they think it means. I’m also asking that health care professionals aren’t fueling that fear. That they give unbiased, balanced information when delivering a potential diagnosis. If they find a woman is carrying a baby who happens to have DS, they don’t just assume they won’t want that baby and book them in for a termination. Which, I’ve heard of many, many times. I ask that they support that woman in the choices she makes.’

Reading through Sarah’s blog and listening to her story, has been inspiring. That’s why I wanted to share it with you. Like many experienced doctors, I’ve been using the same language for a long time and it’s a challenge to change but we can all work to improve the way we communicate. One thing Sarah said, really struck a chord with me:

‘I felt that if the doctor had given us just a tiny bit of hope, by talking about some of the things people with Down’s syndrome are achieving in this day and age, I don’t think I would have felt quite so sad’.

If you’re worried about the results of a screening test then I’d urge you to look at the links below to find out more about Down’s Syndrome and about Oscar, who is now a fantastic five year old school boy.

A Mother's Journey - Down's Syndrome

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