By Dave Andrusko
Last night I took my oldest daughter to a late show at the movies. With my cell phone turned off, it was not until 12:45am that I read on my droid the encouraging email which had been sent to my computer hours earlier.
“Baby Joseph” Maraachi would be leaving SSM Cardinal Glennon Children’s Medical Center in St. Louis, Missouri Thursday morning. I later learned that the gravely ill 14-month-old child would be back home in Windsor, Canada, today where he would be checked out by medical professionals at Windsor Regional Hospital.
In a moment I’ll revisit some of the details of this extraordinary tribute to Joseph’s loving dad and mom, Moe and Sana Maraachli, who were ably assisted by Brother Paul O’Donnell and Priests for Life. But the nub of the story is that Canadian medical authorities refused to perform a tracheotomy so that the child could go home and spend whatever time he has left with his family. (The baby’s condition had been misdiagnosed, as we’ll see momentarily.)
But exactly one month after doctors at Cardinal Glennon performed the tracheotomy, Joseph had responded amazingly well to the operation and was being moved.
“Joseph has been breathing on his own, without the aid of a mechanical ventilator, for more than a week,” said Dr. Robert Wilmott, chief of pediatrics at Cardinal Glennon. “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.”
The St. Louis Review reports that the procedure “provides him with increased mobility and comfort, while at the same time providing a stable, secure airway.”
Physicians at London Health Sciences Centre diagnosed Joseph as being in a persistent vegetative state (PVS) and said a tracheotomy would be invasive and futile treatment. Their plan was to take Joseph off a ventilator and feeding tube. In the culmination of a lengthy series of legal maneuvers, on March 13 Moe and Sana Maraachl moved their son to Cardinal Glennon with the assistance of lawyers and Priests for Life.
Physicians there concluded Joseph was not in a PVS 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, the hospital said, “We concluded that a tracheotomy was medically appropriate.”
Their statement went on to add, “It is our hope that this procedure will allow Joseph and his family the gift of a few more months together and that Joseph may be more comfortable with a permanent tracheotomy. As with any of the children we help, our primary focus must remain on the patient and what is best in his or her individual circumstances. We ask that you keep Baby Joseph and his family in your prayers.”
Baby Joseph was born on January 22, 2010, and initially developed normally. But “By May, the baby started having seizures,” the St. Louis Post Dispatch reported. “He was treated at Michigan Children’s Hospital where a brain scan showed the degeneration of cells. The baby had severe difficulty swallowing, and a feeding tube was inserted. In October, Joseph was taken to the Canadian hospital after he stopped breathing. He then was placed on a ventilator.”
Attempts to wean him off the ventilator were unsuccessful.
The parents resisted the Canadian doctors’ recommendation to take their son off and the dispute was taken to Ontario’s Consent and Capacity board.
According to Court papers, the doctor treating Joseph said “all cranial nerve functions were absent and he has no hope for recovery.” The board concluded that the ‘removal of the endotracheal tube without replacement, a Do Not Resuscitate order and palliative care’ was in the baby’s “best interests.” The parents appealed.
On February 17, Ontario Superior Court Justice Helen Rady backed the doctors’ decision.
Mr. Maraachli was joined in the March 13 flight to St. Louis by Fr. Frank Pavone, national director of Priests for Life. “What we’re saying is ‘Give the baby reasonable care and listen to the parents who want to give the baby a second chance in an American hospital,’” Fr. Pavone said at the time.
The parents say they want the tracheotomy done so Baby Joseph can die at home with his family. Their baby daughter, Zina, had a similar condition eight years ago. In that instance doctors did perform a tracheotomy. Zina lived for six months after the family took her home, according to the child’s aunt.
As the child was being flown back home today, Moe Maraachli issued a statement: “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. This has really helped our family through this hard time, to know there is so much kindness in the world.”
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