McMaster University

McMaster University

Ontario infant at centre of ethics debate has surgery in U.S.

By Renata D'Aliesio
Globe and Mail
Monday, March 21, 2011

An Ontario baby flown to the United States for medical treatment with the aid of an American religious group received throat surgery Monday to help him breathe, a procedure that Canadian doctors had refused to perform.

One-year-old Joseph Maraachli, who has a rare neurological disease, underwent a tracheotomy at SSM Cardinal Glennon Children's Medical Center, a Catholic hospital in St. Louis. The surgery involved making an incision in Joseph's neck to create an airway for a permanent breathing tube.

Joseph's aunt Samar Nader said the family is relieved its fight for the surgery is over. The baby's parents had waged a months-long legal battle after doctors at London Health Sciences Centre in Southern Ontario determined a tracheotomy was unnecessary and invasive because the boy didn't have a hope of recovery.

However, doctors at SSM Cardinal Glennon decided to perform the surgery after a series of examinations and consultation with the hospital's ethics committee. Joseph arrived at the medical centre last week after spending roughly five months in the London hospital, surviving on breathing and feeding tubes.

"We're very blessed and relieved," Ms. Nader said hours after the surgery, as her nephew recovered in a pediatric intensive-care unit.

St. Louis doctors have determined Joseph has Leigh Syndrome, an inherited disorder that attacks the central nervous system, including the brain and spinal cord. He is expected to remain in intensive care for up to 10 days.

Doctors plan to then move him to another St. Louis hospital, which specializes in infant care. Eventually, they anticipate the ailing boy will be able to return to his home in Windsor, Ont.

"It is our hope that this procedure will allow Joseph and his family the gift of a few more months together and that Joseph may be more comfortable with a permanent tracheotomy," the hospital said in a statement.

The battle over Joseph's care has received widespread media attention, igniting end-of-life debates on both sides of the border. An American religious group, Priests for Life, took up the baby's cause, organizing his transfer to the U.S. and raising tens of thousands of dollars for his treatment.

Ms. Nader and family supporters hope Joseph's predicament serves as a catalyst for change in the Canadian medical system. They believe physicians and hospital officials should give greater consideration to the wishes of families.

"This is only one example of countless examples of how there's a failure in the system to allow family-centred care principles to be applied," said Sam Sansalone, an Alberta advocate who has helped Joseph's family.

However, a medical ethics expert and a top Ontario pediatrics doctor contend disputes between physicians and families are rare. They doubt practices and policies will change as a result of Joseph's case.

"We're always going to be making decisions towards and in the best interests of our patients," said Lennox Huang, chief of pediatrics at Hamilton Health Sciences and St. Joseph's Healthcare Hamilton. "In general, those decisions coincide with what parents want to do."

Joseph's parents took their disagreement with doctors to the provincial Consent and Capacity Board, an independent body that has the power to review treatment decisions. The board sided with London Health Sciences Centre, as did an Ontario court.

Queen's University professor Udo Schüklenk, who specializes in bioethics, notes the tug of war proved costly, both in legal bills and in prolonged hospital care.

In hindsight, perhaps a tracheotomy should have been performed, he said.

"Even if that led to no appreciable positive outcomes for the child, which I think is probably true, the parents would have been able to take the child home," said Dr. Schüklenk, who is chairing the Royal Society of Canada's panel on end-of-life decision making.

"The child would have not suffered any further as a result of this particular surgical procedure," he added. "The parents would have been able to find closure."

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