Judge orders baby off life-support
By JANE SIMS
, QMI Agency
Last Updated: February 18, 2011 12:24pm
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VIDEO: A court appeal to stop doctors from removing Baby Joseph Maraachli's breathing tube has been denied, ending the tragic fight by a Windsor family to take their child home to die. Play Video
LONDON, Ont. - Moe Maraachli keeps the snapshots of his dying baby boy in an envelope in his jacket pocket.
He pulls out the photos of the son he's about to lose, trying to understand how a hospital, an Ontario health-related board assigned to judge consent issues, and a London, Ont., court could say he and his wife can't take their baby, Joseph, home to Windsor, Ont., to die.
"I do my best for my baby. I do my best," he said Thursday outside the London courthouse, tears in his eyes.
"This is killing, this is criminal ... I'm sure this is murder."
This Monday, on Family Day in Ontario, Joseph Maraachli, who's in a vegetative state from a neurodegenerative disease, will die after his breathing tube is removed from his tiny body at a London hospital, ending an ethical and legal dilemma that tried to balance unwanted suffering with the needs of a child and his family.
"I lose my baby," Maraachli, 37, who came to Canada from Lebanon 11 years ago, said. "They take him from me.
"I don't lose my baby like God take him. They take him. They want to take him."
"It was basically our family's word versus the medical system's world," said Joseph's aunt, Samar Nader, who's sure she saw Joseph respond to her this week when she touched his head.
"I think in medicine, they're just looking at the world from a black and white point of view.
"The family understands the child and for us to witness his death on Monday ... I don't know."
An emotional Superior Court Justice Helen Rady, who called it "heartbreaking" and "such a sad and difficult case," decided Thursday not to allow the family's appeal of a decision last month by Ontario's Consent and Capacity Board to have the child's breathing tube removed and put in place a do-not-resuscitate order and palliative care.
The baby's father and mother, Sana Nader, 35, wanted the same treatment for Joseph as was given to their daughter before she died, eight years ago at 18 months -- give Joseph a tracheotomy and ventilation, and allow them to take him home to die what would be a peaceful death.
But Joseph's doctors say while a tracheotomy -- an incision is made in a patient's airway, to help breathing -- may prolong the baby's life, it's futile in this case and would likely cause much discomfort. It would certainly also increase the risk of infection and pneumonia, they argue.
"The medical officials would not want this little boy to suffer," Rady said.
When born in January 2010, Joseph, now 13 months, was a beautiful, normal baby.
But five months later he started having seizures like his sister. By June, he couldn't swallow.
In October, he stopped breathing while travelling with his parents. He was taken to an Ingersoll, Ont., hospital, then rushed to the London Health Sciences Centre's pediatric critical care unit where he's been ever since.
His father has stayed in London, Ont., to be with his son.
His mother is in London, Ont., every weekend and returns to Windsor, Ont., to look after the couple's other son, Ali.
Joseph's on a ventilator and fed through a tube. He's in what the doctors call "a persistent vegetative state." The doctors say he's blind and deaf. He's missing all five brain stem reflexes considered necessary for life -- gag, cough, eye movement, pupil and cornea responses. His brain deterioration is irreversible.
A team of doctors, including a world-renowned pediatric expert from Toronto's Hospital for Sick Children, has examined Joseph and agrees he's dying of the same progressive neurodegenerative disease that claimed his sister.
Joseph's doctor told the adjudication board that doctors "reluctantly" gave the couple's daughter a tracheotomy. Since then, doctors have learned "substantially" more about the procedure and determined it isn't right for Joseph.
The board agreed with Joseph's attending doctor that the baby has "no hope or chance of ever recovering."
"While we feel a great deal of empathy for the parents, we held that their view was not in any way realistic," the board said, adding Joseph's parents "were blinded by their obvious love" for their child.
His parents fear Joseph will choke to death once the tube is removed. They say he responds to their touch and wanted the board to see him in hospital before deciding.
Rady said it's unclear what the board would have seen had its members agreed. And she noted that while Joseph's head and body have grown, it doesn't mean the medical assessments are wrong.
The case digs deeply into the delicate balance of life vs. suffering.
Ethicist Margaret Somerville of McGill University's Centre for Medicine, Ethics and Law said the case is "a judgment where the parents are giving priority to the prolongation of life and the doctor is giving priority to the quality of that life."
"I'm sure there's no doubt in this case that this child has a very poor quality of life, but we do know that health-care professionals judge quality of life much lower than people themselves do."
Somerville said such quality-of-life decisions are delicate and often at odds. What needs to be examined is why the family doesn't agree with the decision and if their reasons are acceptable, she said.
The board had ordered Joseph's breathing tube be removed Friday, but Rady said that wasn't sensitive to the family's need.
Instead, she ordered they comply by Monday -- a statutory holiday in Ontario, to celebrate family -- "to afford the whole family adequate time to say their good-byes."
Rady's voice broke when she addressed the family. "I hope that in time you'll find peace," she said.
Joseph's father wasn't satisfied. "It's not help," he said later.
His lawyer, Geoff Snow, said he understands Rady's decision but added, "the loss of a child in any circumstances is tragic and it's unfortunate that there's not more that could have been done."
Lawyer Julie Zamprogna Balles, who acted for the doctor, said Rady's decision was "well-reasoned and compassionate."
While the case had "very sad and unfortunate circumstances," everyone involved, she said, have "focused on little Joseph's best interests."
But a grieving Moe Maraachli said there's "no humanity" in Canada. He expressed a desire to die himself.
"I stay with him until the last moments and hopefully I go with him," he said.