WINDSOR, Ont. — Baby Joseph napping at home in his crib on Easter Sunday is all the proof his father needs that his Ontario doctors were wrong.
Only months ago, the fate of 15-month-old Joseph Maraachli was a question mark. Doctors at London Health Sciences Centre in London, Ont., sought to take the infant off life support as he battled a progressive neurological disease.
But on Sunday, the round-cheeked baby was home in Windsor, resting in a cradle packed with plush toys. Now and then he opened his eyes or wriggled a little, or moved his arms beneath father Moe Maraachli's occasional touches and kisses.
When Maraachli held out a finger at one point, Joseph's own stubby fingers curled around it.
He's breathing without a ventilator, Maraachli said, after surgery in St. Louis — the airway-opening tracheotomy his family sought but couldn't get in Canada as they battled to bring Joseph home to die.
"I feel victorious," Maraachli said, smiling broadly as he stood by Joseph's crib. "I feel I won and my baby's alive."
But he's also been left with questions about why he and wife Sana Nader had to go to the U.S. for help.
"That's what makes me mad," he said. "Why I have to travel to St. Louis?
"I trust my medical system. We have a perfect medical system in Ontario."
But the doctors in London, he said, let him down.
He's not angry at the hospital itself, Maraachli said. But he said he feels he's owed an explanation for the decision to refuse Joseph the tracheotomy.
He isn't sure how long Joseph will live. And he declined to to guess how much time he and his son have left.
"That's by God and by him," Maraachli said, his tone calm and positive. "I never think about that and I don't think about this day."
Joseph's progressive neurological disease was identified in the U.S. as Leigh syndrome. He was originally rushed to the hospital in October while the family was on the way back from Toronto.
When doctors at London Health Sciences Centre sought to take him off life support, his parents refused to give their consent. They wanted him to die peacefully at home. But the hospital refused to give Joseph a tracheotomy, calling the procedure futile and invasive.
Flocks of supporters, many of them high-profile pro-life groups from the U.S., came to the family's aid, and Joseph was ultimately moved to Cardinal Glennon Children's Hospital in St. Louis. There, he underwent the tracheotomy his parents sought.
The operation will allow Joseph to spend his last days at home, without the need for a mechanical ventilator. And indeed, said Maraachli, Joseph is breathing without one.
Battling the system, he said, was the most emotionally painful part of the journey.
The Consent and Capacity Board of Ontario, an independent body created to handle issues under legislation including the Health Care Consent Act, sided with the London hospital. A court appeal by the family failed.
For Maraachli, it seemed like no one was listening to him.
"All these people fighting me. I feel like I'm fighting justice. I'm fighting doctors, I'm fighting the hospital, I'm fighting the medical system. I'm alone."
As the growing controversy around Joseph saw the family divided by travel, Maraachli said it hurt all the more. He said it was hard on Joseph's brother, six-year-old Ali.
"I fight too much because I feel like I'm losing my family," the father said. "I feel like my family's upside down. I feel like (I'm) not (a) good father."
Faith, he said, kept him going.
"I have good faith in my heart and my wife is the same like me, so our faith made us very strong," he said.
Buoying him all the more was the outpouring of support from people across Canada and the U.S. A Facebook group entitled "Save Baby Joseph" had about 15,300 people Sunday. Various pro-life groups in both countries got involved, including U.S.-based Priests for Life, which provided a private flight to St. Louis for Joseph and paid for all his medical care.
Maraachli said if he named all the people he wanted to thank, he'd be talking for hours. The support, he said, gave him a huge boost as he fought to let his son die at home.
"I feel like I'm the hero," he said to describe how the support helped him. "I feel like I'm Superman."
Asked if he ever feared not finding a hospital that would take Joseph, Maraachli didn't want to talk about it. "I wasn't afraid," he said. "I always have a plan B."
As Joseph roused from his rest Sunday, his older brother Ali was quick to act. The beaming six-year-old clambered up into his younger brother's crib, a storybook in hand, ready to read to him — and to give him a little kiss.
Ali has become a part of Joseph's care, too. Maraachli said he's taught him to be something of a nurse. An actual nurse does watch Joseph at night.
He's responsive to his family, Maraachli said. He said Joseph knows when he's being held by his father.
Now, he said, things are returning to normal for the Maraachli family. He said even after the tracheotomy, Joseph's daily routine isn't that different from a normal baby's.
"My life is normal," the father said. "It's back, not upside down, but I still need the answer why."
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