WATCH ABOVE: Alberta moms are voicing concern over some health workers responses to Down syndrome pregnancies. Global’s Jill Croteau reports.
CALGARY – Close to 80 per cent of families with a Down syndrome diagnosis choose to terminate the pregnancy, but some Alberta mothers who decided to deliver rather than abort, say their choice wasn’t supported by those in the health care system.
Krista Rowland gave birth to her daughter, Adele, just over two years ago. Since then, she’s wanted to give a welcoming sense of comfort to other families who have children with Down syndrome. Rowland gives the new parents baskets full of resources to support them, but has heard stories that trouble her from the bedsides of new moms and dads.
“What doctors need to realize is words carry a lot of weight,” said Rowland. “When a new family is given a Down syndrome diagnosis and the next words that follow are ‘termination’…who has the right to tell a family their child’s life has no value? Nobody…nobody has this right.”
Another Alberta mom, Raquel Muscarella, said when she told her doctors termination wasn’t an option for her, one health care worker called repeatedly for weeks.
“They keep calling everyday and it makes me feel like what’s wrong? She is still a human,” said Muscarella.
Some obstetrician-gynecologists say personal choice shouldn’t impact advice from a health professional.
“I’ve heard about it on both sides,” said Calgary gynecologist Dr. Jaelene Mannerfeldt. “I’ve heard of situations where parents are given information and then told physicians don’t believe in disruption; they aren’t even given the option to consider termination.
“It’s a good wake-up call to think about, ‘okay what’s the message I’m giving to parents?’”
Some parents who’ve had the experience of raising a child with Down syndrome say it can be intimidating, but suggest families empower themselves with information.
“It was definitely assumed we wouldn’t carry this pregnancy to term,” said Ciara Gossen. “It made it harder, filled us with doubt and trepidations, like, ‘are we crazy? Are we doing the right thing?’”
Gossen and her husband said carrying their child, Jude, to term was the right choice for their family and they don’t want to judge what others decide for themselves.
“I’m surprised how normal our life is and I wish someone told me that,” she said. “I shed many tears out of fear.”
For more information and local support groups in Alberta, visit the Canadian Down Syndrome Society here.
While acknowledging an often-cited 90 per cent termination rate of Down syndrome pregnancies, the society quoted a 2014 National Down Syndrome Congress presentation from American bioethicist Dr. Mark Leach as saying, “the more recent studies from select states suggest that the rate instead is somewhere around 75 per cent.” The society said there have been no specific studies done in Canada.
With a file from Erika Tucker
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