'Baby Joseph' Dies at Home After Long Treatment Battle

Sept. 28, 2011 — -- Baby Joseph, the 20-month-old terminally ill infant at the center of an end-of-life debate, died Tuesday in his Ontario home.

Joseph Maraachli, who had come to be known as "Baby Joseph," was thrust into the forefront of the end-of-life debate in February, when Canadian doctors told his parents, Moe and Nader Maraachli, that no treatment could bring their baby out of a persistent vegetative state. Joseph had Leigh syndrome, a progressive, degenerative neurological disease, which had claimed the life of his brother eight years ago at the age of 18 months..

Because Joseph's condition was terminal, the Canadian government denied him the tracheotomy that would have allowed him to live out his remaining days at home with his family. His parents fought this decision, and for months, Joseph's life remained in negotiation as advocacy groups fought the Canadian government to allow him the procedure, underscoring the sensitive balance many parents and health systems face between keeping babies alive as long as possible and pouring money and medical resources into a losing battle.

With the help of Priests for Life, a New York organization that lobbies against abortion rights and euthanasia, Joseph was eventually flown to a St. Louis hospital for the tracheotomy last April, which allowed him to spend his last five months at home with his family.

The Rev. Frank Pavone of Priests for Life, who led the effort to get Joseph end-of-life care in Missouri, commented on the infant's death in a statement:

"I learned with sadness tonight of the passing of Baby Joseph, and extend my prayers to his family. I praise God tonight for the tens of thousands who stood with Priests for Life and other 'pro-life' groups to save Baby Joseph. We remain convinced that the value of life is not measured in months or years, but rather, reflected in the love we share moment by moment."

Baby Joseph's End-of-Life Care Saga

Last February, Joseph's condition had deteriorated to the point where doctors at the Canadian hospital treating him presented his parents with a consent form that would allow doctors to take him off life support. But the Maraachlis refused to sign the waiver and fought for their son to receive a tracheotomy.

The case was brought to the Consent and Capacity Board, an independent body created by the government of Ontario, and then a Canadian Supreme Court judge. Both entities ruled that Joseph's breathing tube should be removed. It was only after Priests for Life offered to pay Joseph's medical costs that he could get the tracheotomy on March 21.

"I would call this a success," Pavone told ABC News at the time. "We did this based on the value of the child's life here and now, not based on any specific medical outcomes. The family wasn't looking for anything extraordinary, just to be able to have him at home."

"From the beginning, the point of view of the family has been 'If my child is dying, at least let us bring our child home,'" Alex Schadenberg, executive director of the Euthanasia Prevention Coalition, who has acted as a spokesman for the Maraachli family, told ABC News last March.