Sophie's choice

A Canadian court will decide whether Sophie Brassard must give her children a drug cocktail or lose them to a foster home.

By Alyson Mead

Dec 8, 1999 | Sophie Brassard, a 37-year-old single mother in Canada, is scheduled to fight in a Montreal court today for the custody of her two children, 4 and 8. She wants them back. The state wants them placed in permanent foster care. The reason: Brassard, who is HIV positive, has refused her doctor's advice to treat her children, both of them HIV positive, with the drug AZT. She believes it will kill them.

Though the Canadian government has not formally charged Brassard with any crime, it removed the children from her care in July, when she was detained at the Montreal airport while trying to leave the country with her kids. In the course of her custody hearing, the court is expected to decide, for the first time in Canada, whether the state has the power to mandate medical care.

The decision, even though it will come from a Canadian court, is expected to have significant impact in the U.S., where parents who withhold medical treatment from their children, often for religious reasons, have found themselves in court with no legal precedent to guide their arguments. Their opponents struggle in the same void, as decisions tend to vacillate on a state-by-state, case-by-case basis.

Dr. Seth Asser, an associate clinical professor of pediatrics at the University of California at San Diego's School of Medicine, finds the overall emphasis of court rulings in the United States to be "consistent" with his opinion. As a board member of Children's Healthcare Is a Legal Duty (CHILD), his mission, and that of the group, is to "protect children from abusive religious and cultural practices."

"Sometimes the parents have religious reasons, or an adherence to folk medicine to prevent medical care for diseases with viable treatments," says Asser. "But when the reasons are capricious, like wanting to use herbs that havent been scientifically tested, the courts generally say that the parents are free to make martyrs of themselves, but not their children."

But more and more often, these battles specifically involve HIV and treatment with antiretroviral drugs -- in utero, in breastfeeding and later in a child's life. Religion, folklore and herbs don't often figure into these arguments and the outcomes have been as unpredictable as the effects of the disease and its still-controversial treatments.

In a custody hearing held in April in Eugene, Oregon, an HIV-positive mother was told by the court that she could not breastfeed her son, who is HIV negative. She was allowed to keep the baby in her home, but he is technically in the states custody. In a mildly farcical arrangement, a social worker visits once a week to make sure the child is not breastfed.

Meanwhile, in a case last year that is likely to be cited in Brassard's hearing, Valerie Emerson, a mother in Bangor, Maine, won the right to withhold AZT from her second child after her firstborn, who had been on the drug, died just before her 4th birthday. Though no formal ruling was made about whether the drug killed the girl, Emerson believes that it did and she prevailed in the hearing. (Her son, who still has not taken AZT, is currently healthy.)

The relative merits of AZT, a drug developed 30 years ago as a form of chemotherapy and later found to be potentially effective against the spread of AIDS, will be on trial in Brassard's hearing. But so will her rights as a parent of a sick child. The issue of parental prerogative when a child is gravely ill has fueled years of impassioned and confusing debate in Canada and the U.S. In Brassard's hearing, as in every trial that has pitted parents against doctors and child advocates, each side will claim the same motivation -- saving the lives of ailing children.

"Mentally, I was preparing myself to go to my childrens funerals," says Brassard. "There were times when I wanted to kill myself, but then I realized I had to keep fighting, for the sake of their health."

Ridiculous, says Dr. Mark Wainberg, president of the International AIDS Society in Canada and the inventor of antiretroviral drug 3TC. He maintains that Brassard and other "AIDS dissidents" are comparable to Holocaust deniers. They are, he says, "ill-informed, confused individuals who either do not or cannot understand the issues involved."

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