By Alex Schadenberg
On September 27, 2011, Joseph Maraachli, better known as baby Joseph, peacefully died at home with his family caring for him in Windsor Ontario Canada.
Some of the article about the baby Joseph case have referred to him as being in a Persistent Vegetative State (PVS). Baby Joseph was not in a “PVS” condition nor was he ‘brain-dead,” but rather he was living with a neurological condition that resulted in him dying a natural death.
The baby Joseph case garnered International attention when Victoria Hospital in London Ontario decided to remove the ventilator from Joseph against his parents wishes. Moe & Sana Maraachli had accepted that Joseph would likely die of a similar neurological condition that their daughter had died from several years earlier, but they were determined to bring Joseph home where they could care for him throughout the final months of his life. The baby Joseph case affected us all.
To bring Joseph home required that a Tracheotomy be done to enable Joseph to breath on his own. The doctors and the hospital refused to do a Tracheotomy and in turn brought the case to Ontario’s Consent and Capacity Board who sided with the doctors. The Maraachli family appealed the decision of the Consent and Capacity Board to the Superior Court, who also sided with the doctors and the hospital.
The crux of the decision was that Joseph would not recover from a “PVS” state. The term “PVS” has come to mean that there is no hope of recovery and that all medical treatment can be withdrawn. What is ridiculous about this medical terminology evolution is that people who are labeled as “PVS” are not only being denied medical treatment but also basic care, such as fluids, food, anti-biotics and oxygen.
Nonetheless baby Joseph was not in a “PVS” state.
Soon after returning from St. Louis, I went to meet with the Maraachli family and to see Joseph. When visiting the Maraachli home in Windsor it was clear that when Joseph was held, when his back was rubbed, when he was loved and cared for, that he was reacting.
Some would call these reactions “reflexes” but Joseph was not simply reacting by reflex, but rather he was reacting to touch and stimuli.
No one questions that Joseph had a neurological condition, but to label baby Joseph as “PVS” is inaccurate and dehumanizing.
A family friend, Kim Hessels, told a reporter:
“They sang to him and played music for him. It calmed him when he was upset.
“He didn’t like wearing socks. He fussed until someone took them off.”
We need to be very careful before labeling a human being. Every person deserves to be treated with equality and dignity. People with disabilities, especially those with Neurological disabilities, need to be treated with equality and dignity.
Editor’s note. This appeared on Mr. Schadenberg’s fine blog.