After two years of work, a bill designed to provide expectant parents with the latest information about Down syndrome has made it to the provincial legislature.
Sarah Valiquette-Thompson, who lived in Severn at the time and currently resides in Nova Scotia, worked with Simcoe County parents to get the ball rolling on the effort.
Monday was an emotional day for Valiquette-Thompson — the mother of three-year-old Harvey, who has Down syndrome — as she watched Brampton Centre MPP Sara Singh introduce her private member’s bill, Harvey and Gurvir’s Law, during National Down Syndrome Awareness Week.
Formally known as Bill 225, Provision of Information Respecting Down Syndrome, it is named after Valiquette-Thompson’s and husband Ian Thompson’s son, Harvey, and Singh’s sister, Gurvir.
“I don’t even know how to put it into words,” Valiquette-Thompson told OrilliaMatters. “This is the most emotional, impactful thing I could have contributed to. It really hits home, obviously.”
She recalled being in a “dark spot” when she learned she was pregnant with a child who had Down syndrome.
“It was very, very new to us,” she said. “You’re an emotional wreck. You’re scared. You don’t know who to talk to.”
That experience was what ultimately led her to fight for a change in the way information is provided — and the type of information that is provided — to parents who receive that prenatal diagnosis.
Valiquette-Thompson heard stories of parents who were given outdated or incorrect information about Down syndrome and its effects on a person’s ability to be successful in life.
“The whole essence behind the bill comes from the desire and the need to give expecting families current, up-to-date information,” she said. “There’s a multitude of stories about being told they wouldn’t be able to attend school and post-secondary education, but we’re seeing that. They’re kicking butt out there.
"They’re doing wonderful things and they’re enriching their communities. Things have evolved and it’s really important to ensure that up-to-date information is provided,” said the former Orillia city councillor.
Bill 225, which would amend the Regulated Health Professions Act, aims to do just that. It states, in part, health professionals “shall not, until 48 hours have elapsed since the information was provided, recommend any further testing or any treatment in relation to the diagnosis of Down syndrome unless explicitly requested by the expectant parent or parents or unless the member is of the opinion that it is necessary to perform the testing or treatment during the 48-hour period.”
It’s referred to as a “cooling-off period,” intended to prevent rash decisions, but Valiquette-Thompson stressed it is not mandatory under the legislation for parents to wait 48 hours.
“It means maybe give yourselves time to understand what the diagnosis means and you can make the most informed decision for your family,” she said.
She thanked all of the parents who shared their stories, which helped shape the bill, and she praised Singh for her work.
“It came from such a personal place for both of us. She’s the most passionate, authentic person,” Valiquette-Thompson said.
While there are more steps before the bill can be passed, simply having it introduced in the legislature is a weight off her shoulders.
“I actually feel some closure now from some of the things we went through,” she said.
