Sally Phillips’ son Olly is just like any kid. He likes ice cream and Barcelona football club. He’s energetic, loves to laugh and can often be found mucking about with his mates.
He was also born with Down’s syndrome.
In a new documentary, Phillips, who is a mum-of-three, offers viewers a glimpse inside her life and asks the question: “What’s so dreadful, to the world, about Down’s syndrome?”
“Maybe there’ll be someone who watches this programme and decides to have a baby they otherwise wouldn’t have had,” she explained.
“I’m not going to lie, living with Olly does present some challenges. But I go to work where I’m also surrounded by mayhem. So I’m kind of used to it.”
In the past 10 years, the number of people terminating their pregnancies because of Down’s syndrome has gone up by 40%, Phillips explained in the documentary.
To find out why, the actress met with a doctor specialising in fetal medicine.
Professor Nicolaides said he had learned that “for some people, having a baby with Down’s syndrome is an intolerable event”.
“Because they live for many years,” he added, “it is a burden that lasts for a long time.”
Phillips explained she has never thought of her son as a burden, but added that when he was born she was “expecting tragedy”.
“But I got comedy,” she added, smiling.
Phillips said it’s perhaps no surprise that many women, including herself, expected tragedy when NHS guidance surrounding babies with Down’s syndrome is “frightening” for mums-to-be.
“To me, Down’s syndrome is more than a list of possible health problems,” she said.
For Phillips, the ethics of pregnancy screening is also a cause for concern.
She met a woman called Emma to find out why she had chosen to forego the screening process to see if her unborn baby had Down’s syndrome.
Emma explained that her first child Scarlett was born with Down’s syndrome and, as such, she found it “hurtful” that doctors would try and force her to have a screening to see if her second baby would be the same.
But yet, despite asking doctors to write that she’d declined screening on her medical records, at later check-ups she was still questioned about it.
“I love Scarlett, she’s amazing, why wouldn’t I want another child like her?” she said.
Emma added that she chose not to know whether her child had Down’s syndrome to protect herself from the doctors who she felt would “harass” her.
“It comes from their lack of understanding of what it’s like to have a child with Down’s syndrome,” she said.
Phillips also explored the science and thinking around the proposed new screening test for Down’s syndrome and its possible availability on the NHS.
She chatted to experts in the Down’s syndrome community, the world’s top scientists and even people with Down’s syndrome to ask the particularly difficult question of: what sort of world do we want to live in and who do we want in it?
While it’s an interesting – and sometimes heartbreaking – watch, perhaps Karen Gaffney, who has Down’s syndrome herself, offered the most important bit of wisdom.
“All lives matter,” she said.
‘A World Without Down’s Syndrome’ airs tonight at 9pm on BBC 2.