Sunday 25 August 2019

'A top figure at the BBC said a Down syndrome child was a life sentence': Actress Sally Phillips on life with her son Olly

As the UK announces a pre-natal test to detect Down syndrome, actor Sally Phillips, whose son Olly has the condition, has made a documentaryfor the BBC on the ethical implications of the medical breakthrough

Sally with son Olly
Sally with son Olly
Life: Sally Phillips had made a documentary for the BBC
Career: Sally Phillips as Shazza in Bridget Jones's Diary

Shortly after Sally Phillips gave birth to her eldest son Olly 12 years ago, she was taken into a small room in the hospital and asked to sit down.

"The doctor said 'I'm so sorry' and the nurse cried," Phillips recalls. "And it was really clear that this was breaking bad news."

She and her husband, Andrew were told that Olly had Down syndrome. It came as a complete surprise. None of the pre-natal tests had picked up on it. Phillips "just sort of compliantly went along with the way the story was presented to me". Later, they took their newborn son home in a kind of fog.

"You go home to deal with the 'bad news' and you have friends and family who come round and get drunk and talk about the 'bad news' and it's all like something dreadful has happened," she says with a tired smile. "And something important has happened and you're going to have to let go of some of the dreams you had, but it's really not as bad as everyone makes out."

Sally Phillips in BBC documentary 'A World Without Down's syndrome?'
Sally Phillips in BBC documentary 'A World Without Down's syndrome?'

Most of us know Phillips as a comic actor who rose to prominence as one third of the all-female sketch-show 'Smack the Pony' before gaining lead roles in the hugely popular BBC sitcom 'Miranda' and the 'Bridget Jones' films. In 'Bridget Jones's Baby', out now, she reprises her role as Bridget's best friend, Shazza.

But Phillips also has a serious side. Next week, the BBC will air a one-hour documentary which she presented and co-wrote, entitled 'A World Without Down's syndrome?' The programme examines the issues around Down syndrome with intellectual rigour but is also extremely moving, largely because of Phillips herself who made the decision to include Olly in the film. He emerges as a chatty, engaging and kind little boy who often has his younger siblings, Luke, nine, and Tom, four, in hysterics.

When she told her younger children their older brother had Down syndrome, Luke responded, "and have I got Up syndrome?", says Phillips.

"And then to Tom, I said, 'You have to understand, sometimes Olly doesn't understand and he gets angry.' And Tom said, 'What, like Dad?'"

After the initial teary conversation in the hospital, she was expecting tragedy. Instead, she got comedy.

"I suppose I always like absurd scenarios," she acknowledges. "I just started noticing that it was funny… So, 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: 'Okay, this isn't that different from work.' I mean, he's got great comic timing. He's naturally incredibly funny. Always has been."

Of course, Phillips and her husband were often intensely stressed or in denial during those first five years. Of course, it took a period of adjustment. Naturally, it wasn't exactly what they had expected parenthood to be, and sometimes it required help from live-in nannies and grandparents (something which Phillips admits she is lucky to be able to afford). But, in other ways, it was better.

Phillips began to realise she was "laughing more than anyone else. I remember being on a bus hearing mums with babies with prams just complaining and thinking, 'We're not doing any complaining and not because we're heroes'. I can't really explain why".

"Maybe it's the release of not having an end-game. You're off-road so you're completely liberated from all the things the Hampstead Mums around you are doing.

"The irony that struck me was that with Olly, we were doing speech and language therapy and physiotherapy but all those mums were doing that anyway. But it wasn't called therapy, it was called 'baby signing' because the quicker your child learns to talk, the better chance they have of getting into a good school.

"We were doing physiotherapy, they were going to Gymboree to maximise their baby's potential. We were all doing the same things, it was just that we had to do it. But it was in no way tragic."

She wishes, looking back, that the doctor and the crying nurse who told her about Olly's diagnosis could have been more positive. She is a Christian, a feminist and firmly pro-choice, but says, "I think I would have been really served by having someone around standing up and saying 'This is a good thing.'"

Sally with son Olly
Sally with son Olly

This lies at the heart of Phillips's documentary. In January, it was announced that the NHS would be offering a Non-Invasive Pre-Natal Test (NIPT) which is said to detect Down syndrome in pregnancies with 99pc accuracy. At the moment, nine out of 10 British women terminate after being given a positive diagnosis - and Phillips thinks that's largely because there is a lack of understanding about what living with Down syndrome actually means.

Since the NIPT became available privately in the UK, terminations have gone up by a third. The rolling out of the test on the NHS to women whose babies are at high risk of Down's means there's a distinct possibility that, in the near future, the only children born with the condition are those whose parents have explicitly chosen that fate.

"And that has ethical implications," says Phillips, "as to whether the government supports [the costs of raising a person with Down's] or not because it's kind of: 'it's your bed, lie in it.'"

Phillips says there is still a lot of ignorance surrounding the condition. While making the documentary, "A top figure at the BBC said to someone involved, 'I mean, a Down syndrome child - that's a life sentence.'"

© Telegraph

'A World Without Down's syndrome?' is on BBC2 tonight at 9pm

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