Down syndrome parents speak up over blood test

SALLY Phillips sensed, days after the birth of her first son, Olly, that there was something different.

So there was a prickle of foreboding when she was called to a room at the hospital and asked to sit down.

Phillips is an English actor, presenter and comedian, but there was nothing funny about the scenario that followed.

“The doctor said ‘I’m so sorry’, and the nurse cried,” Phillips told The Telegraph of the way the conversation began where she and husband, Andrew, were told Olly had Down syndrome.

“And it was really clear that this was breaking bad news.”

Fast forward more than a decade and Phillips, perhaps best known in Australia for her role of Shazza in the Bridget Jones movies, now has three sons, and is a staunch advocate for people with Down syndrome.

And she is one of the Down syndrome parents leading the charge over a controversial new pregnancy screening test that can detect with 99 per cent accuracy foetal abnormalities including Down syndrome.

The NIPT (Non-Invasive Pre-Natal Test) is a simple blood test and doctors are lobbying to make it free for all Australian women who want to take it, reporter Liam Bartlett reveals in an interview to air on 60 Minutes on Sunday.

But statistics showing nine out of ten women who receive a positive result are already choosing to terminate their pregnancies have horrified many of the families of Down syndrome children, including Phillips.

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“Be really aware that you are getting on a conveyor belt towards the decision about whether or not to terminate,” warns Phillips. Picture: Channel 9Source:Channel 9

Fact is, the test could effectively end Down syndrome. But to do that requires the pregnancy to be terminated.

Last year Phillips co-wrote and presented a documentary on the BBC entitled A World Without Down’s syndrome.

The documentary tells her personal story with Olly, and came about after NIPT was offered by the National Health Service.

And as Australia grapples with the prospect of free NIPT, she is on a campaign to get mums and dads to think “very, very carefully” when the screening tests are positive for Down syndrome.

“Just be really aware that (by taking the test) you are getting on a conveyor belt towards the decision about whether or not to terminate,” she says.

“I believe that women who believe they are terminating for Down syndrome on medical grounds are being misled.”

Phillips said she had no idea Olly would be born with Down syndrome, but has come to learn it is not the terrible disability many believe.

“Is it a reason to terminate? For me personally, that’s not a reason to terminate,” she says.

Her immediate thought when told about Olly was “Oh, Down syndrome, we can manage, we can do that,” she reveals.

“And then ... it was my second, third and fourth thoughts that were a problem.”

As the news hit home, she remembers thinking “he’s going to suffer and be in terrible pain, that my marriage is going to break up. Will I be able to work?”

“I mean, you think all these things, you know. I didn’t think I’d be able to work. I thought I’d just have to stay home with a dribbling baby.”

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“He's got great comic timing,” says Phillips of her son, Olly. Picture: Channel 9Source:Channel 9

She says the scenario was one of negativity rather than hope.

“I didn’t know any optimistic stories. All the myths, you know, it’s not true, all these things are not true.”

She told The Telegraph last year that after that first grim conversation at the hospital, she was expecting sadness.

Instead, amid stress, denial and adjusting, the family also found laughter.

“I just started noticing that it was funny,” she said.

“For example, when Olly ran away wearing a Leo Sayer wig and outsized sunglasses in the shape of stars and you’re chasing him down the road barefoot, it’s ‘OK, this isn’t that different from work’…I mean, he’s got great comic timing.

“He’s naturally incredibly funny. Always has been.”

She said while Olly might not go to Oxford University some of his achievements far outstrip those of others.

“People aren’t fascinated by the things people with Down syndrome can do better, which are: relate to people, be funny, be comfortable in their own bodies,” she says.

That’s the message she wants to get across.

“If you stop thinking about Down syndrome as a disease, then there’s nothing to be sorry about. You’re lucky actually,” she tells Bartlett.

“I don’t think of him as Down syndrome really, he’s my son. You know, he’s my son.”

60 Minutes airs at 8.30pm Sunday on Channel 9

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