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Baby Joseph with his father Moe Maraachli
early this morning as they head home to Windsor, Canada.
WINDSOR, Ontario, April 21, 2011 (LifeSiteNews.com) – Baby Joseph and his family arrived in Windsor, Ontario on a medical transport flight from St. Louis, Missouri this morning. He is now at the family home, according to Brother Paul O’Donnell.
On behalf of Baby Joseph’s family, Brother O’Donnell told LifeSiteNews that that their son was weaned off ventilator support 12 days ago and has been successfully breathing on his own since then.
Baby Joseph, who has been at the center of an international right-to-life debate over the past few months, has defied critics by responding so well to treatment. After the Ontario hospital treating Joseph’s progressive and terminal neurological disease threatened to remove his life support against his parents’ wishes earlier this year, pro-life groups rallied to Joseph’s cause.
With the financial support and assistance of Father Frank Pavone and Priests for Life, Joseph was taken to Cardinal Glennon Children’s Medical Center in St. Louis, Missouri where doctors performed the tracheotomy that Joseph’s parents had been requesting all along.
Sixteen-month-old Baby Joseph received a successful tracheotomy on March 21, responding well to the procedure, which gave him increased mobility and comfort while providing a stable, secure airway. With the tracheotomy, which created an opening into Joseph’s windpipe through an incision in his neck, Joseph’s airway has been kept free from secretions that would have caused him to choke.
Dr. Robert Wilmott, Chief of Pediatrics for SSM Cardinal Glennon and Saint Louis University School of Medicine, said Joseph has been breathing so well on his own there will be no need to take him to a local rehabilitation hospital and he can be transported to Ontario.
“Joseph has been breathing on his own, without the aid of a mechanical ventilator, for more than a week,” Wilmott said. “By providing him with this common palliative procedure, we’ve given Joseph the chance to go home and be with his family after spending so much of his young life in the hospital.”
Meanwhile, Joseph’s parents and 7-year-old brother, who have spent more than a month in St. Louis, have expressed their extreme gratitude to all who have made it possible to save the life of their son.
“So many people from the United States and Canada and all around the world have reached out, sent letters and called my family to let us know they were praying for us and thinking about us,” Joseph’s father Moe Maraachli said. “This has really helped our family through this hard time, to know there is so much kindness in the world.”
“We are so grateful for the amazing care and compassion we have received from the doctors, nurses and staff of Cardinal Glennon. Our family also wants to thank the team at Windsor Regional Hospital for reaching out to our family and Dr. Wilmott and making the transfer back home a reality.”
Commending the staff at Cardinal Glennon, Fr. Frank Pavone of Priests for Life said Joseph has defied so many critics.
“Our mission to save Baby Joseph and help his family was never based on any prediction of the future, but rather on the value of his life here and now. Our critics, on the other hand, looking into the crystal ball that ‘right to die’ advocates seem to always think they have, claimed our intervention was futile because Joseph would only end up having a machine do his breathing for him,” said Fr. Pavone.
“We don’t have to answer their criticism; Joseph is doing that for us, with every breath he takes,” continued Fr. Pavone. “Baby Joseph’s victory over the culture of death is especially powerful now, as we prepare for Easter, a time when Christians everywhere celebrate Jesus’ victory over death.”
“Priests for Life is happy and humbled to have played a small part in making this joyous day possible. We ask everyone to join us as we continue to pray for Baby Joseph and his family.”
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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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Baby Joseph is home, and apparently not as unconscious as the London hospital representative stated. From the story:
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.
Love. Comfort. Touch. These are important to every baby.
Joseph’s father wants answers:
“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?”
That’s a good and important question. Joseph clearly was not on the verge of death when the hospitals wanted him off life support and refused a tracheotomy. The tracheotomy obviously provided him great benefit, and in fact, is apparently a normal palliative procedure in cases such as this. Indeed, he’s off of machines and home where he can die peacefully in his own time.
So, why was Joseph and the family treated so badly? Why did the family have to go the USA to obtain proper care for their baby? Will Canada Medicare pay for the procedure that so clearly should have been provided to Joseph in his home hospital?
Don’t expect answers to come readily. I have noticed that when a case goes against what the futilitarians predicted, they generally hide behind closed doors–until the next time they boldly assert that wanted, efficacious treatment for a dying or profoundly disabled patient is “inappropriate.” That shouldn’t be allowed to happen. The Canadian authorities should investigate.
Perhaps a good place to start to right the wrong would be a sincere apology from Joseph’s doctors and the hospital administration to the family.