An Update on “Baby Joseph”

By Dave Andrusko

Baby Joseph with his father Moe Maraachli and his seven-year-old brother Ali

Doctors at SSM Cardinal Glennon Children’s Medical Center in St. Louis, Missouri, will perform a tracheotomy today or tomorrow on the gravely ill thirteen-month-old Canadian baby, Joseph Maraachli, “to facilitate his transition to a skilled nursing facility,” according to Dr. Robert Wilmott, chief of pediatrics. “Baby Joseph” has been the focal point of an international debate over treatment, with the parents asking for a tracheotomy for their son and London Health Sciences Centre, in Ontario, Canada refusing.

A tracheotomy creates an opening into the airway through an incision in the neck. “The trache tube then help draw fluid out of the lungs, creates a safe and stable way to use a mechanical ventilator, and is more comfortable for the child,” according to CBC News in Canada. The hospital said this would be invasive treatment, risked infection, and was futile.

The baby’s exact condition is defined in various ways, but the common denominator description is that he suffers from a progressive neurodegenerative disease.  He has been on a ventilator since he arrived at the London Health Sciences Centre last October.

Dr. Wilmott said in a statement Monday that Cardinal Glennon hospital is “pleased to be able to assist the family in this very challenging time.” Added Bob Davidson, a hospital spokesman, Cardinal Glennon staff thought “we could at least provide this family with a second opinion, so that’s what we agreed to do.”

The baby’s parents, Moe Maraachl and Sana Nader, had been in an drawn out battle with London Health Sciences Centre before Baby Joseph was airlifted late Sunday night to Cardinal Glennon hospital,  a move made “despite the strongest possible medical advice to the contrary,” according to the Centre.

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.

Baby Joseph’s was born on January 22, 2010, and initially developed normally. However, according to the St. Louis Post-Dispatch, “doctors watched him closely because his older sister died in infancy from a severe neurodegenerative disorder similar to Joseph’s, according to records from the Ontario Consent and Capacity Board, the independent health care panel that ruled in Joseph’s case.

“By May, the baby started having seizures,” the newspaper 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.

According to press accounts the Canadian doctors’ wanted to take the baby off a ventilator and feeding tube. The parents refused and the dispute was at taken to Ontario’s Consent and Capacity board.

According to Court papers, the doctor treating Baby 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 backing the doctors’ decision.   

Mr. Maraachli, were joined in the 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.’”

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