In sad news, Joseph Maraachli, the baby boy at the heart of a passionate end-of-life dispute, died peacefully in his sleep on Tuesday. He was at home in Windsor, Ontario, with his family at the time he died. He was 20-months old.
Baby Joseph suffered from Leigh Syndrome, a rare genetic disease that affects the central nervous system and has no cure. He was initially treated at The London Health Sciences Centre in London, Ontario. Doctors there refused to perform a tracheotomy on him, saying the procedure was invasive and that he had no chance of recovery. They further issued a decision to remove life support. His parents successfully fought the decision, saying that they as parents should make the decisions for their son, not the doctors.
Baby Joseph was transferred to SSM Cardinal Glennon Children’s Medical Center in St. Louis, Missouri, where doctors performed the tracheotomy on March 21st after deeming it medically appropriate.
Baby Joseph defied the prognosis of his doctors, who gave him only days to live upon disconnection from the ventilator. He survived his tracheotomy and went home to live for five months with his loving family. The extraordinary efforts of this family, along with countless other compassionate end-of-life workers, provided Baby Joseph a more humane and loving death.
A spokeswoman for the Maraachli family, Emma Fedor, summed up the debate beautifully, “The heart of the issue would come down to the mix between respecting the parents’ rights … to be in comfort of (their) own home, to die on God’s time.”
Certainly this is a painful blog post to pen, and I am unable to do so without showing emotion and the compassion of a mother. Our hearts go out to the extraordinary family of Baby Joseph and we wish them them peace, comfort and healing in the days ahead.