Two weeks ago, doctors advised Moe and Nader Maraachli that their baby's degenerative disease was so bad that no treatment would cure his persistent vegetative state. Health care professionals presented Baby Joseph's parents with a consent form that would allow doctors to take him off life support.
But the Maraachlis refused to sign the waiver.
Today, 13-month-old Baby Joseph's life literally continues to be in negotiations, underscoring the sensitive balance many parents may face between keeping their babies alive as long as possible and pouring money and medical resources into a losing battle for their child's life.
The case was brought to the Consent and Capacity Board, an independent body created by the government of Ontario, and then a supreme court judge. Both entities ruled that Baby Joseph's breathing tube should be removed.
Joseph's parents have appealed both decisions, and the debate has incited strong emotions on both sides of the platform.
"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,'" said Alex Schadenberg, executive director of the Euthanasia Prevention Coalition, who has acted as a spokesman for the Maraachli family.
"They weren't asking for extraordinary medical treatment or for the government to pay for a ventilator with an in-home nurse."
The Maraachlis requested that doctors perform a tracheotomy, so that Baby Joseph's family could take him home and take care of him in his final days. While other babies in similar situations have been sent home with a breathing tube and ventilator through the Canadian health care system, Schadenberg said the family was not offered this option, and Joseph's parents did not know to ask.
But a statement given Monday from London Health Sciences Centre where Baby Joseph has been treated since October, 2010, said the contrary: "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 home, on a breathing machine, and then placing him the arms of his family before withdrawing the machine."
The statement goes 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 has sparked heated debate throughout North America, and the hospital has even reportedly received several threats from people in the United States and Canada. Support for the Maraachlis has swelled in recent days, and people have come together in at least two different Facebook groups to stand behind the family.
One group, Save Baby Joseph, has more than 13,000 members, and another, Save Baby Joseph Maraachli, has more than 1,300 members.
Some have even argued that the government overriding a parents' wishes would not happen in the United States because Americans personally pay for medical expenses, while Canada has a publicly funded medical system.
But Schadenberg said the main question here is: who really has the right to decide on this baby's fate?