Ailing U.S. Girl Suspended in a Health Care Limbo : Medicine: Child is stranded in Canada hospital. Critics say her plight points to flaws in this country’s system.

A 6-year-old American girl with severe lung disease has spent nearly a third of her life in a children’s hospital in Vancouver because Canadian officials have been unable to find an American hospital that will supervise her care.

Now, after spending more than $1 million over the last two years, the Canadian government is trying to close the door on Zahra Jessa: Canadian immigration authorities last week ordered Zahra and her family deported. The deportation of the child, who until recently had no health insurance, is contingent on arranging for her medical care in the United States.

The case has turned Zahra, her mother and her younger sister into medical exiles. It has outraged Canadians as well as advocates of health care reform in the United States.

Despite more than a year of intensive efforts, “we have been unsuccessful in getting any jurisdiction in the United States to take responsibility for the care of this child,” said John H. Tegenfeldt, president of British Columbia’s Children’s Hospital, where Zahra has lived since July, 1990. “It is a real reflection of problems in the health care system that exist in the (United States).”

“It really is an indictment of the American health care system,” said Arthur Caplan, director of the Center for Biomedical Ethics at the University of Minnesota in Minneapolis. “The little girl and her family have wound up in a medical limbo.”

Dr. Paula Braveman, a health policy researcher at UC San Francisco, said the situation is “really disgraceful” and a “particularly poignant example of where our health care system is headed, unless we take some dramatic action. . . . The safety net isn’t there.”

Tegenfeldt said Zahra is a “very delightful child.” Although on a personal level “everybody is concerned to provide the best for this patient and have actually grown very attached to her,” he said the hospital’s primary responsibility is to care for Canadians.

Nevertheless, “we will not send this child elsewhere if she cannot be cared for appropriately,” he said. “We are not going to just dump this child.”

The child’s plight became known in Canada this month when it was publicized in Vancouver newspapers.

“So which is the better system, President Bush?” the Vancouver Province later editorialized. “Yours with instant (heart) bypasses for those who can afford them, or ours with little waiting lists for some surgery but instant care for those who can’t afford health insurance in your country.”

About 9.8 million children in the United States, or 15% of all American children, were uninsured in 1990, according to the Employee Benefit Research Institute in Washington. This number is believed to have increased as the recession has thrown more Americans out of work and triggered cutbacks in government services.

Canada has a universal health insurance system, which is often discussed, particularly in this presidential election year, as a possible model for health care reform in the United States.

Canada spends far less of its gross national product on health care than the United States, while providing health insurance for all of its citizens. Canadians have longer life expectancies than Americans, and Canadian babies are less likely to die during the first year of life than American babies, according to studies.

The Canadian system, however, is criticized for shortages of expensive new technologies and waiting lists for some surgeries.

The Jessa family has declined to discuss the case. According to hospital officials, the child, who has a chronic fibrotic lung condition, was visiting relatives in British Columbia two years ago when she developed severe shortness of breath. At the time, her family was living in Dallas.

Zahra was taken to the hospital, and physicians admitted her to the intensive care unit. The hospital did not find out until later that her parents had no insurance and were not able to pay for her care. Caplan said some American hospitals would have performed “wallet biopsies” before admitting such a patient and “even in an emergency, they would have avoided her like the plague” for financial reasons.

The child’s respiratory difficulties were so severe that she required a tracheotomy, a procedure in which an opening is made into the windpipe through the neck so that a breathing tube can be inserted. She is now dependent on a ventilator to breathe.

Zahra has been living in the hospital’s 22-bed pediatric intensive care unit. But her condition has gradually become stable enough so that she could be treated at home with nursing assistance, Tegenfeldt said. As a non-resident, however, Zahra is not eligible for such outpatient services in Canada. Tegenfeldt said hospital officials have been trying to transfer Zahra to an American hospital since the middle of 1991.

First, they tried two Dallas hospitals, a county facility and a pediatric facility, which Tegenfeldt declined to name. “From a health care standpoint, both could care for the child,” he said.

“Both absolutely refused to the extent that they were prepared to take legal action to stop the child from coming.” Tegenfeldt said he learned that the family had some unpaid bills for her prior care at these hospitals. But he was still “surprised” by their response.

Subsequently, the family has established residence in Washington, and the child has gained eligibility for Medicaid, the state and federal health insurance program for the poor. The hospital is working with Children’s Hospital and Medical Center in Seattle, home health agencies and the state Medicaid office to try to devise a plan for her care.

Zahra continues to amass medical bills of $1,000 a day, but Tegenfeldt is increasingly hopeful of solving the problem. In Washington “there seems to be a good faith effort to resolve the issue,” he said.