'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.

The Ethics of Infant End-of-Life Care

"They weren't asking for extraordinary medical treatment or for the government to pay for a ventilator with an in-home nurse," he said.

But an April statement from London Health Sciences Center, where Baby Joseph has been treated since October 2010, read another way: "The LHSC position is consistent with the treatment plan approved by Ontario's Consent and Capacity Board as being in the best interest of Baby Joseph. It involves transferring him home, on a breathing machine, and then placing him the arms of his family before withdrawing the machine."

The statement went on to say: "The transfer would not involve performing a tracheotomy, which is not a palliative procedure. It is an invasive procedure in which a device is installed in a hole cut in the throat. It is frequently indicated for patients who require a long-term breathing machine. This is not, unfortunately, the case with Baby Joseph, because he has a progressive neurodegenerative disease that is fatal."

The controversy sparked heated debate throughout North America, and the hospital reportedly received several threats from people in the United States and Canada. Support for the Maraachlis swelled, and people came together in at least two different Facebook groups. One group, Save Baby Joseph, had more than 13,000 members, and another, Save Baby Joseph Maraachli, had more than 1,300 members.

Some argued that a government's overriding parents' wishes would not happen in the United States because Americans pay for their own medical care, while in Canada it's publicly funded.

But Schadenberg said the main question here is: Who really has the right to decide on this baby's fate?

Pavone said it should not be up to medical professionals to determine whether treatment to improve a child's end-of-life was "worth it." "We respect their medical judgment but not their value judgment. The problem is that the medical people are making a value judgment on the life of the child," he told ABC News last spring.

Felicia Cohn, director of medical ethics at the University of California at Irvine, told ABC News last March that she had been involved in similar conflicts, and an ethical review was needed.

If conflict arises, a clinical ethicist or an ethics committee may assist in making the decision, and the courts should be a last resort.

"These cases will continue to arise as long as we value a diversity of belief systems and opinions," Cohn said. "We struggle with balancing the different values involved."