Ottawa

Doctors delivering bad advice to expectant parents, Down syndrome advocates say

Advocates for children with Down syndrome say too often, doctors are automatically offering to terminate the pregnancy when they give parents the prenatal diagnosis.

Prenatal diagnosis often packed with negative stereotypes, groups say

Ontario charities that support families of children with Down syndrome are urging the province to ensure doctors provide expectant parents with better information during prenatal diagnoses. (David Donnelly/CBC)

Lorelei Labelle remembers crying when her doctor told her that her unborn child showed signs of Down syndrome.

It wasn't the diagnosis itself that had upset her, but the way the doctor broke the news.

"The doctor just said, 'I'm sorry,' and, 'I assume you're going to want to make a termination appointment,'" Labelle told CBC Radio's Ottawa Morning.

Her daughter, Elly, is now three, but Labelle still fights back tears when she thinks about that moment.

Parents of children with Down syndrome say that too often when doctors deliver the diagnosis they focus only on the negatives. Now there's a push for the province to bring in legislation to change that We hear why one mother says it's needed. 8:34

The doctor called it "mongolism," an archaic and offensive term for the genetic disorder.

"I had no idea what it meant, so we left the appointment still not quite knowing or understanding what the diagnosis was," Labelle said. 

Labelle and her husband lived in Gatineau at the time, but they moved to Ontario and changed doctors soon after. 

"We were still asked every appointment if we were choosing to terminate. We never heard anything positive," she said.

Parents need more information

Labelle began speaking to other parents and became vice-chair of the Down Syndrome Association - National Capital Region.

She's now on a mission to make sure parents who receive the same prenatal diagnosis have the information and support they need.

"We'd like full information given, not just one-sided, not all the negatives — same as you would with any pregnancy," she said.

The Down Syndrome Association of Ontario is currently leading a letter-writing campaign asking the provincial government to pass legislation ensuring other parents don't go through the same experience as Labelle.

Lorelei Labelle holds her daughter Elly, 3. (Darren Major/CBC)

A child full of love

Labelle describes her daughter, Elly, as a child full of love.

"When we go shopping she's waving to everybody in the mall. If we go to the park she wants to hug every child in the park before she starts to play."

So what would Labelle tell that doctor now?

"I'd want him to spend time with my family, just to see that life isn't what he thought our life was going to be."