By Dave Andrusko
I’m told by the technical types here at National Right to Life who (unlike yours truly) know how to track reader responses that an extraordinary number of people have followed our stories about “Baby Joseph” Maraachli, the 15 month-old baby who, though very ill, is now safely back at home with his family in Windsor, Ontario, Canada.
His parents, Moe and Sana Maraachli, battled doctors at London Health Sciences Centre in London, Ontario. The staff not only rejected their request that Joseph receive a tracheotomy on the grounds that the surgery was invasive and futile but also sought to disconnect his life support.
With the help of lawyers and Priests for Life, on March 13 Joseph was flown to SSM Cardinal Glennon Children’s Medical Center in St. Louis. Doctors found that the baby was not in a Persistent Vegetative State, as doctors at London Health Sciences Centre had concluded, but suffered from Leigh syndrome, a genetic neurological disease that is progressive and has no cure. After a thorough examination and consultation with his parents and the hospital’s ethics committee, Cardinal Glennon hospital “concluded that a tracheotomy was medically appropriate.”
“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,” said Dr. Robert Wilmott, chief of pediatrics for SSM Cardinal Glennon.
The latest update comes from a local Canadian newspaper, the Windsor Star, under the headline, “’I feel victorious,’ says Baby Joseph’s father.” Written by Jeff Bolichowski, the story touchingly conveys Mr. Maraachli great joy that his son was in his own crib on Easter.
Neither the reporter nor Mr. Maraachli downplays the gravity of Joseph’s medical condition. Nor would his father speculate how long his gravely ill son would live.
“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.”
Beyond happiness that Joseph was home, the other dominant emotion in the story is Mr. Maraachli’s sense that he never received an adequate explanation why the Canadian hospital would not perform a tracheotomy, and the sense that “no one was listening to him.”
The operation “will allow Joseph to spend his last days at home, without the need for a mechanical ventilator,” Bolichowski writes. “And indeed, said Maraachli, Joseph is breathing without one.”
As the story approaches its conclusion, the father expresses worry that all the traveling and separation was hard on six-year-old Ali, Joseph’s brother. But then there are these delightful paragraphs.
“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.”
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