Bev Hatch shortened her daughter's sleeves for half a century. She bought regular shirts and cut the fabric below the shoulder, then bent over a sewing machine to adjust the clothes to her daughter's truncated, deformed limbs.
Lately, Ms. Hatch has felt a little weary. Aged 79, she recently put the sewing machine away.
"I feel," Ms. Hatch says, "that I've had enough."
Ms. Hatch's daughter, Sandy, was born with the flipper-like arms that were the signature effect of the drug thalidomide. Her birth, along with scores of others in the early 1960s, shocked the country that had believed in the safety of drugs. But for every one of Canada's "thalidomide babies" there was a thalidomide mother – a woman like Ms. Hatch who silently endured the impact of Canada's notorious drug scandal firsthand, and continues to carry its burden.
The women were in many ways guinea pigs for a federally approved drug that was inadequately tested and aggressively marketed as safe to take during pregnancy. Yet many women who carried the babies then carried guilt and lifelong responsibility for what it did. As survivors anxiously await compensation from Ottawa to help them confront growing health problems due to their disabilities, mothers like Ms. Hatch are watching intently from the sidelines with a deep emotional stake in the outcome, too.
"I have to know," Ms. Hatch says of her daughter, "that she'll be okay."
Many of the Canadian women who took thalidomide are no longer alive to witness the recent months' breakthrough developments in Ottawa. No one knows for sure how many women gave birth to children with the drug-induced deformities, and how many gave them up at birth. Those who raised them faced the confusion of having children with extremely rare malformations before the age of the Internet and readily available support.
"These mothers were rearing children in a world which contained no adults quite like them," Ethel Roskies, a retired University of Montreal psychology professor, wrote in a 1972 book about thalidomide mothers.
Ms. Hatch and her 78-year-old husband, Doug, have been by their daughter's side unfailingly through the years – through Sandy's myriad childhood surgeries, her teenage struggles, her steadfast determination through adulthood and, in recent years, her growing physical decline. Sandy lives downstairs in her parent's bungalow in Hamilton.
Ms. Hatch still handles basic day-to-day tasks like preparing her daughter's meals and doing her laundry. Facing her own mortality, she says money from Ottawa would bring her peace of mind and, on a deeper level, signal that Ottawa was making amends.
"It's always there. You always feel that it's your fault," Bev Hatch says. "I don't think there's a mother that has any child born with anything wrong that doesn't think it's their fault." She adds, "If they get some kind of settlement, it's an acknowledgment that they [the federal government] were wrong. They made the mistake. But they didn't live with it."
Ms. Hatch was 26 when she took thalidomide. Husband Doug was a firefighter on the Hamilton force and it was his turn to work the night shift. His absence at night left Ms. Hatch unsettled. She turned to a drug she was told was "the safest sleeping pill on the face of the Earth."
She swallowed a few pills, unaware she was pregnant. She thought no more about it until she came across a Life magazine article during her pregnancy. It was about the birth defects caused by thalidomide in Europe.
"That's when I knew it was a possibility," Ms. Hatch says. "You hope it isn't going to happen. You just put it in the back of your mind."
Sandy was born in September, 1962, without arms and with deafness in her right ear. Her parents raised her to be independent, and she was a fighter. A top student in high school, she cared for animals on a hobby farm with her parents and later trained dogs. For a few years, she earned her own income and lived independently in an apartment.
But Sandy's health has declined precipitously in recent years. She moved back in with her parents and now relies on her devoted father to drive her on shopping errands. Once able to ride horses and drive her own car, Sandy now can barely make it out of bed. The first thing she'd buy if Ottawa comes through with funding is an electric bed with an adjustable back.
"I've been losing pieces of my independence over the years little by little," Sandy says. "But the last few years, I've been whammied by it. Some days I feel like I'm 90 years old."
Little is known about the Canadian women who mothered thalidomide babies or how they fared. Ms. Roskies's study of 20 such mothers in Montreal found that only eight had been aware they were pregnant when they took the drug; by the time they realized they were pregnant, the damage caused by thalidomide was already done. Most got thalidomide from their doctors or from doctors who were relatives. After the children were born, the women wavered between guilt and anger because the tragedy was preventable. Five of the mothers went into deep depressions. Most feared their children would come to blame them.
Mothers' testimonials today reveal how aggressively drugmakers were peddling the pill to the four corners of Canada.
In the baby-boom years of the early 1960s, a salesman dropped off samples of thalidomide in the offices of the village doctor in a remote hamlet in Quebec's Abitibi region, some 750 kilometres northwest of Montreal. That is where a young woman named Yolande Gosselin received a one-week sample from her doctor in late 1961. Thalidomide was a "miracle" treatment for insomnia and morning sickness, at a time when few questioned drug safety or challenged the word of their physicians.
Ms. Gosselin's daughter was born without legs; in those days, disability was something to be hidden away. Ms. Gosselin faced relentless pressure to institutionalize her daughter. She refused. Ms. Gosselin raised her daughter and still speaks to her every day. In the end, she never blamed her doctor for what happened. "It's Ottawa that didn't take its responsibilities," the 80-year-old says.
The prospect of federal aid would come as something of a balm for the mothers of thalidomide. "It's not just for the survivors but for their parents, who were the first victims of the drug. There are parents who are 85, 87 years old who are still worried about their child," said Mercédes Benegbi, head of the Thalidomide Victims Association of Canada, who said on Sunday that she is still awaiting word from Ottawa about a financial aid package. "They deserve to have their minds put at ease."
The mothers include women like Maxene Settle. Ms. Settle was lying on the delivery table in hospital in 1962 when her doctor gave her the news about her newborns.
"You have twin boys and they're both terribly deformed," he told her. "It would be a blessing that God takes them."
At the time, Ms. Settle had no idea the boys' shortened limbs were the result of the drug her doctor had prescribed her for nausea. Her sons were three months old when Ms. Settle came across an article about thalidomide. Only then did she make a connection.
She and her late husband "pinched pennies" to provide for their twins and four other children, and she endured a mother's pain of watching the twins each undergo multiple surgeries. "As mothers, we suffered terribly. We suffered for our children," she said from Hamilton.
Now 82, Ms. Settle sees time running out. She still wishes for an apology from Ottawa that never came. But she would rest easier if there were help for her sons as they struggle with a growing barrage of daily pain. Her plea to Ottawa is about her sons, and it is also about her own well-being.
"I haven't got long on this Earth. Do something. Do something before I die," Ms. Settle says. "Then I'll feel I could go to my death thinking they're well looked after."