Bill aims to protect Down syndrome babies

Lucy and Alcido Fank were never interested in having an amniocentesis screening to find out whether or not their baby would be born with Down syndrome.

“They mentioned that — to find out if she had Down’s. I said, ‘It doesn’t make a difference.’ Even if she does, we’re not going to have an abortion,” Lucy Fank said.

Today Victoria Fank is an 18-year-old high school graduate who loves to tease her twin brother Nicholas.

But the Fanks’ firm stance against abortion is not common. Since prenatal screening for Down syndrome became common over the last 30 years, the population of people with Down syndrome has plummeted. Some claim 90 per cent of all pregnancies carrying a child with Down syndrome are terminated, though Canada does not record the reason for an abortion. 

In Denmark 98 per cent of prenatal diagnoses of Down syndrome lead to abortion. In France, it’s 77 per cent, and in the United States 67 per cent. In Canada, the pressure brought to bear on expectant parents can be enormous.

Now a private members’ bill before the Ontario Legislature hopes to rebalance the information given to expecting mothers and give them a little space to breathe before making any decision about the future of their unborn child.

Bill 225, also known as Harvey and Gurvir’s Law, is sponsored by Sara Singh, NDP MPP for Brampton Centre. Singh is pro-choice and firmly rejects any suggestion that her bill seeks to prevent women from choosing to abort.

“What we’re just trying to do is equip families and medical professionals with additional information that is standardized across the province,” Singh told The Catholic Register. “What we’ve heard from families is that, for example, in northern communities they’re receiving very different information than folks are down here in Toronto.”

Singh’s younger sister Gurvir, 28, has Down syndrome, a genetic variant that adds an extra copy of chromosome 21. She says doctors gave her mother inaccurate information when she was pregnant with Gurvir in 1991. She was shocked to learn some of the same information is being passed onto expectant mothers today when Sarah Valiquette-Thompson came to her with the idea for the bill. Valiquette-Thompson is the mother of Harvey, the three-year-old whose name is also on the bill.

“Sarah and my mum, when they received their prenatal diagnosis of Down syndrome, were given quite a lot of misinformation about what having a child with Down syndrome would look like,” Singh said. “My mum was told that my sister may never walk, may never feed herself — that she would be a burden to the family. … So many mums across the province, and frankly across Canada, are still experiencing that very same reality when given that prenatal diagnosis.”

Singh’s bill, which made it through first reading Nov. 2, would amend the Regulated Health Professions Act to stipulate standard and current information about the lives of children with Down syndrome. It would also impose a 48-hour “cooling off” period before any more tests, treatments or therapies are embarked upon.

Lucy Fank does not remember her doctor exerting much pressure to take the amniocentesis.

“Not prenatal but post-natal, after she was born,” Fank said. “My doctor actually said that I would live to regret having her. … She actually said, ‘You will regret — it’s going to be a lot of work, this kid’s going to be a lot of work.’ ”

Grief and anger over the people with Down syndrome who were never permitted to be born is a central point in the play Rare, produced by award-winning playwright Judith Thompson, and performed and written by actors with Down syndrome. 

“I am a pro-choice person, but I am deeply troubled when choice becomes eugenics,” said Thompson. “People need to understand that a child with Down syndrome is every bit as precious and perfect and joyful as a so-called normal child.”

Lucy Fank is well aware of the missing Down syndrome children Victoria could have grown up with.

“In the end, for me she needs to be with other kids with Down’s because she can identify with them. She feels safe. She feels comfortable with them,” Lucy Fank said.

When Victoria entered high school four years ago, it had been a decade since the school had taught a Down syndrome child. There are now four at her school and the Fanks count themselves lucky for the little community Victoria has had in school.

The Ontario bishops are aware of the new legislation and Association of Catholic Bishops of Ontario president Bishop Ron Fabbro said they would be following it.

“If we can address the stigma of people with Down syndrome before they’re even born, that will hopefully start to change the hearts and minds of people in our community about what people with Down syndrome can achieve,” said Singh.