'Anything But Sorry': What to say when a baby is born with Down syndrome

For Ed and Mary Casagrande, the birth of their middle child, Emma, was a moment of celebration. The Casagrandes were told when Mary was five months pregnant that their baby had Down syndrome.

Now, four years later, Emma continues to be a bright light in their family. 

"She brings joy to our family every day. She lights up a room anywhere she goes. She is a blessing. She completes our family," said Ed Casagrande, a Toronto resident and member of the board of directors of the Canadian Down Syndrome Society.

"There's nothing to be sorry for."

On Friday, the society launched a new campaign, entitled "Anything But Sorry: The 'S' Word," that includes a YouTube video, a website with information on how to welcome a baby born with Down syndrome into the world, Facebook birth announcements that can be filled out by parents, even if their babies are now children, and congratulatory greeting cards that can be ordered.

Warning: Graphic language

Casagrande acknowledges that the video includes swear words but says it is trying to make the point that the birth of a baby with Down syndrome is a happy occasion, not a sorrowful one, and it's time Canadians changed their perception of such events.

"We chose some colourful language on purpose," he said. "You can say anything you want to parents who have had a child with Down syndrome, but the word you really shouldn't say is, 'Sorry.'"

Kirk Crowther, the society's national executive director, based in Calgary, told CBC Toronto that the video is part of Canadian Down Syndrome Society week. Two other videos will be rolled out this week that feature parents of babies with Down syndrome.

"We are hearing from parents in the office and they are telling us that there has been no congratulations, from the doctor who delivered the baby, to the nurses, to family members," he said. 

"We are really trying to educate the public to say that sorry is something you don't say. It's a new child. It's a birth to be celebrated. It's not the loss of a child at all. We are trying to change the perceptions of Canadians." 

Crowther said the idea is to get parents of babies with Down syndrome the support they need, especially from members of their communities.

"Congratulations should absolutely be the first thing that anybody hears."

'You just had a baby!'

Crowther said the outlook for people with Down syndrome has changed greatly in the last 30 years.

"People with Down syndrome have such a positive future now. There are options to get post-secondary education, there are options to get married, there are options for employment. All of those things have really changed. This is just a step in that evolution."

In the YouTube video, there is a warning about inappropriate language and then the first frame asks: "What do you say to parents who just had a child with Down syndrome?"

A series of actors, all with Down syndrome, answer the question. "You can say almost anything," says one. "Like, holy sh-t," says another. "You just had a baby!" says a third. "Sh-t, yeah," says a fourth.

"Congratu-f--kinglations!" says the first actor. A few other suggestions are made.

'The only bad word is sorry'

"The truth is, the only bad word is sorry," says one of the actors. Then all of the actors say, "Sorry" in low voices. 

"You're supposed to be celebrating," says one. "Woohoo," says another. "So, don't be sorry about a baby," says one more. "Be happy," suggests another.

"Because every baby deserves a warm f--king welcome," says yet another.

Crowther says the society is taking "a little bit of a risk" by using language that could be called vulgar, but he says an edge is needed to the campaign to make a point. And so far, it's being well received.

Last year, the society won about 15 awards for its video, "Down Syndrome Answers." It was considered Canada's most awarded not-for-profit video in 2016. "We are hoping this does the same," he said.