“I’m so sorry”: Why we need to rethink our relationship with Down syndrome.

Video by World Down Syndrome Day

When Sally Phillips gave birth to her son Olly, she had a sense something was different.

It was 10 days later that a doctor sat down with Sally and her husband Andrew and said, “I’m sorry, I’m so sorry”.

“The nurse on duty cried,” Sally told The Telegraph, “I don’t think anyone said anything at all positive.”

Her son Olly was diagnosed with Down syndrome, a genetic condition caused by an extra chromosome. People with Down syndrome might have a short neck, a smaller head, ears and mouth, wide, short hands, poor muscle tone and displacement of the tongue.  Other characteristics include delayed development, learning disability, speech impairment, and in some cases, congenital heart disease.

Olly Phillips. Image via BBC.

It was all framed as 'bad news', Sally said. "You go home to deal with the 'bad news'... and it's all like something dreadful has happened."

Sally had never heard "any optimistic stories". She thought she wouldn't be able to work, and that having a Down syndrome baby would ruin her marriage. "I thought I'd just have to stay home with a dribbling baby," she told 60 Minutes last night.

But that's was not at all how her life unfolded.

Advertisement

Allana and Lovro, a Sydney couple, had a similar experience - except Allana received a positive result when she was tested during pregnancy, to see if her baby would be born with Down syndrome.

"I think I've got some bad news for you..." the doctor told them - evoking words nearly identical to what Sally received. "It looks like you have a risk of having a child with Down syndrome, and you really need to think about your options and what your next steps will be."

The couple were told to "think carefully about the implications of Down syndrome on [their] marriage and on [their] daughter."

Allana. Image via 60 Minutes.

Two years ago, Allana gave birth to a beautiful baby boy, Matteo, and he has Down syndrome. He has also enormously enriched their family.

Lovro told 60 Minutes, "we knew it might mean some extra work... but that wasn't necessarily a deterrent. It wasn't a life threatening condition."

But there is a sizeable push in Australia to make the Non-Invasive Pre-Natal Test (NIPT) - a straight forward blood test with 99 per cent accuracy when it comes to detecting foetal abnormalities - free for all Australian women.

Currently, of the women who are given a 'high risk' diagnosis, nine out of 10 elect terminations.

Of course - whether a termination is the 'right' or 'wrong' decision is not up for debate. Each woman ought to make a choice that makes sense for her. Some may not have the finances or resources to raise a disabled child, and there are countless other reasons for choosing to terminate.

That is not the issue.

Rather, the problem is misinformation.

When Allana was told her baby would most likely be born with Down syndrome, along with profound sympathy, she was given a print out from 1987.

Sally told 60 Minutes, "it's spoken about during pregnancy as the worst case scenario," and "most people don't know anyone with Down syndrome". So how can anyone truly know what to expect?

"I'm blaming no one," Sally added. "You want to make the best decision based on truth. You need to do it on correct facts... not out of date facts." She argues that we are being fed outdated, stereotypical and damaging information about Down syndrome kids.

Sally Phillips is a British comedy actress, and has appeared in films such as 'Bridget Jones' Diary.' Image via Universal Pictures.

Olly has improved Sally's life, and their family's life, "beyond measure".

"He's also incredibly caring. He's the only one of my three kids who every single day will ask me how my day was. He's really kind. He's really focused on other people. He's really gifted emotionally. He'll notice if people are upset when I won't," she told The Telegraph

To Sally, Olly is not her Down syndrome son. He is her son who also happens to have Down syndrome.

Liam Bartlett, the 60 Minutes reporter covering the story, took a moment part way through the segment to define Down syndrome. "It's kind of like a genetic spelling mistake," he explained.

But perhaps 'mistake' is precisely the type of language we should be avoiding. Just as Down syndrome is not a disease, it also shouldn't be conceptualised as a 'fault' or 'flaw'. It is, rather, a different way of being.

Sarah Roberts, a mother of a boy with Down syndrome, recently wrote on her blog Don't be Sorry, "I've often been puzzled by the use of the 'RISK', 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 [her son] hasn't exposed me or anyone else to danger. Quite the opposite.

POST CONTINUES BELOW: What happens when your child with a disability grows up? 

"So I (along with a lot of other parents of kids with DS) feel that 'chance' would be a much better use of language...

“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.”

When it comes to the diagnosis of Down syndrome, there is a narrative so far beyond the genre of tragedy. As Sally told 60 Minutes "People say 'I'm sorry'. There's nothing to be sorry about."

It's not as simple as 'bad news' or 'high risk'. Many people born with Down syndrome will go onto to live independent, fulfilling lives, and they're the stories we're not hearing.

Just as it is unproductive to romanticise the experience of raising a disabled or differently-abled child, so too is it reductive to simplify it as devastating or impossible.

As with anything, there are shades of grey.

And though there might be pain and difficulty within these stories, there is also unequivocal beauty.

JOIN THE CONVERSATION
FROM OUR NETWORK