Susan Nixon survived the childhood taunts that came from looking different from other kids. She would hide her misshapen hand inside her pocket and ignore the name-calling as best she could. But one thing Ms. Nixon has never overcome is her belief that her defect was not the result of mere chance.
Ms. Nixon is convinced she was born with a crooked forearm and only three fingers because her pregnant mother took the drug thalidomide. Armed with faith, memory – but no proof – dozens of Canadians like Ms. Nixon are stepping forward with claims that they are unrecognized victims of thalidomide and deserve federal compensation.
"I hope they recognize me, because I suffered all my life too," says Ms. Nixon, 54, who lives in Montreal.
The issue is coming to a head. Ottawa is soon expected to name an administrator to run its new $180-million financial-aid package for survivors of thalidomide, the "wonder" drug prescribed in the 1960s that caused an epidemic of devastating birth defects. The main job of the third-party group will be distributing long-awaited pensions to Canada's 94 recognized survivors. But authorities face another major task: evaluating the claims of Canadians who believe they are victims of the drug – prescribed to treat morning sickness in pregnant women – but have little or no evidence.
Families dragged into the thalidomide tragedy have never had it easy. When the scandal unfolded in the early '60s and more than 100 babies were born in Canada with severe drug-related defects, some doctors who'd prescribed the drug tried to distance themselves from the scandal; records vanished or burned in mysterious fires.
One Canadian mother who joined a lawsuit in the 1970s against the drug's manufacturer, Richardson-Merrell, recalls that her doctor kept evading lawyers' efforts to get him to admit he had given her thalidomide. Finally, she managed to get her doctor on the phone.
"Do you remember giving me a sample [of thalidomide]?" the woman, who asked not to be identified, asked the doctor point blank. "'Yes, I do,'" he replied. An investigator for the law firm was taping the conversation. He got the evidence he needed.
With the passage of time, obtaining precious avowals or medical records has become even more elusive. Yet Health Canada says it will consider new claims only if people include proof, such as medical or pharmacy records, that their mother took thalidomide during her first trimester of pregnancy.
Ms. Nixon's birth records were destroyed. She doesn't have an incriminating pharmacy prescription. However, a doctor in the 1990s signed a letter saying it was "highly likely" that Ms. Nixon's malformation was linked to thalidomide.
"My mother told me it was caused by medication she took during pregnancy," Ms. Nixon says. "She didn't want to talk about it, I honestly believe she felt guilty about it, and she took it to her grave."
Other countries with thalidomide survivors have opened the door to new claimants who don't have proof. The odds of being recognized are long, but such recognition is not impossible.
In the United Kingdom, the announcement of a £20-million ($40-million) thalidomide fund in 2010 spawned a surge in new claimants. Only those born within the time period associated with thalidomide's availability were considered. Then, even those without documents were able to go before a panel of medical and legal experts who evaluated their cases one by one, weighing the "balance of probabilities" they were victims.
Others did provide belated evidence. In one successful case, a woman who had been adopted soon after birth petitioned to obtain her adoption records; in them, she got confirmation that she had been a thalidomide baby. In another case, thalidomide had been given to a pregnant woman by her husband, a doctor. The children had evidence but only sought compensation after their father died, to avoid family tensions.
Still, out of 600 claimants who presented themselves in the United Kingdom, only 20 were approved for financial support.
"There will be some people in Canada who've been overlooked," Martin Johnson, who was long-time head of the Thalidomide Trust in the U.K., said in an interview from Cambridge, England. But it was unlikely to be a large number, he cautioned.
In Canada, the NDP plans to press the new Liberal government to follow the U.K.'s lead and show flexibility toward the undocumented claimants. NDP MP Murray Rankin wrote to the previous Conservative government saying Canada had a "clear moral obligation" toward them.
"The only way to do them justice is to give them an opportunity, with the same approach as the U.K.," Mr. Rankin, who was his party's health critic before the election, said in an interview.
Part of the challenge comes from assessing what constitutes thalidomide damage. Experts agree that phocomelia – shortened, seal-like arms – is a signature sign. However, malformations of the limbs can be linked to other issues, unrelated to thalidomide.
All of Canada's 94 recognized victims are automatically part of the government's compensation package, which was announced this year after a campaign fought by the Thalidomide Victims Association of Canada. Now, Mr. Rankin said, evaluators should show "generosity of spirit" toward undocumented applicants and take their "physical injuries" into account.
"We owe it to these people, he said. "It's the right thing to do."