ST. LOUIS — Thanks to the intervention of Priests for Life, a critically-ill baby from a Muslim family in Canada will receive care at a Catholic hospital in the United States.
The transfer of “Baby Joseph” Maraachli March 13 to SSM Cardinal Glennon Children’s Medical Center in St. Louis via private plane was paid for by Priests for Life. The group has also agreed to pay the family’s medical bills in the U.S. A spokesman at Cardinal Glennon said the hospital would perform a tracheostomy on the child and work to get him into a skilled nursing facility closer to the family’s home in Ontario.
Father Frank Pavone, national director of Priests for Life, explained that the group wanted the baby to have “reasonable care” and noted that the parents wanted the child to get a “second chance in an American hospital.”
“If there is a chance this boy can live, we have to explore every option,” Father Pavone said in a press release.
Baby Joseph had been at the London (Ontario) Health Sciences Center, which sought the family’s permission to remove the 14-month-old from his ventilator. This would have led to suffocation due to his progressive neurodegenerative disease, which his doctors say is fatal anyway.
The Maraachlis want to bring Joseph home to die, but to do so he must be removed from his ventilator and given a tracheostomy. The hospital refused to do a tracheostomy, insisting “it is not a palliative procedure. It is an invasive procedure in which a device is installed in a hole cut in the throat.”
For its part, the family refused permission to disconnect, then set up a “Save Baby Joseph” Facebook page, a petition site by the same name and YouTube videos showing the baby, who the hospital claimed was vegetative, responding to tickling.
The story crossed the border when a Detroit hospital initially agreed to examine Joseph but then reneged. Fox News jumped on the story, and in the resulting furor the staff at London Health Sciences Center was subjected to death threats and accusations of murder and euthanasia.
The boy’s father, Moe Maraachli, also wanted to pray privately with his son. But staff wouldn’t let that happen because their disagreement over Joseph’s fate has become so bitter and high profile.
The hospital secured favorable rulings from both a judge and the Ontario Consent and Capacity Board, but the family nonetheless got the hospital to hold off.
Family spokesman Sam Sansalone says that in Canada, generally, there is a trend “to strip the human rights of the cognitively disabled infant. It is spreading like a disease, putting at risk anyone who isn’t contributing much to the GDP.” He has studied medical outcomes in the U.S. and Canada and says his data suggests, disturbingly, that “someone with my daughter’s disabilities is four to 10 times likelier to survive in the U.S.”
One of Sansalone’s own daughters is cognitively disabled, and he has championed the cause of families like the Maraachlis for a decade as they fight medical professionals for control of their loved ones’ care.
Sansalone isn’t willing to attribute the higher death rate for children like his daughter Katya and Joseph to public health systems per se, but he does believe the way Canada’s system works is that “the same people who are making these life-and-death decisions are managing the fiscal envelope. They are cutting costs by limiting treatment to the most vulnerable, the cognitively disabled infant and the elderly.”
And when the same provincial government that sets the health-care budget also runs the courts, the police and the judiciary, he says, “there is a lack of independent accountability. This is a test case for human rights.”
Alex Schadendberg, executive director of the Ontario-based Euthanasia Prevention Coalition, says the Baby Joseph case illustrates the quandary families find themselves in when they disagree with hospitals and doctors over treatment of family members. “This is a very specialized area of law, and only about six lawyers here are expert in it. Four of them will only work for hospitals. Most people don’t understand you need a barracuda to fight a barracuda, and so they hire a general lawyer or, in the Baby Joseph case, they started with a legal-aid lawyer.”
In 1993, Ontario created the Consent and Capacity Board to resolve family-hospital disputes, but according to Schadenberg, “it’s only speeded things up, which is good, but it hasn’t shifted the serious disadvantage the family is under.”
Most decisions have gone the hospitals’ way, he says, and the burden of proof has shifted dangerously. Officially, the board decides on the basis of what is in the best interest of the patient, says Schadenberg. But, in fact, the board assumes that medical professionals know better. “The onus is on the family to prove the doctor or hospital is unreasonable.”
The family got its way in one recent decision, says Schadenberg, because it found a doctor who was willing to provide the desired treatment.
That is now the route the Maraachlis are following.
Steve Weatherbe writes from Victoria, British Columbia.