Joseph Maraachli is a 15-month old who suffers from the progressive neurological disease Leigh Syndrome. His parents faced a protracted legal battle in Ontario court after doctors in Canada refused to perform the surgery, asserting it was futile since the child’s disease was terminal.
An Ontario court upheld the doctor’s right to remove the child’s breathing tube, forcing the parents to file an appeal while the family, with the help of U.S.-based Priests for Life, sought the help of American hospitals.
When Cardinal Glennon agreed to treat Joseph, Priests for Life funded a private jet and immediately flew Baby Joseph to St. Louis, where he underwent the tracheotomy one month ago. The hospital declared the surgery to be a success, as Joseph has now been breathing without a ventilator for over a week.
The Associated Press reports:
St. Louis doctors said the procedure provides Joseph with increased mobility and comfort while providing a more stable airway. It protects his lungs from inhaled saliva or other material that could cause aspiration pneumonia.
In fact, Cardinal Glennon had originally planned to send Joseph to a St. Louis rehabilitation hospital but decided against it once doctors saw how well the baby responded to the tracheotomy.
Reverend Frank Pavone of the Staten Island, New York-based organization Priests for Life confirmed that the baby was back in their Ontario apartment after a quick checkup at Windsor hopistal.
“It’s just a great thing,” said Pavone.
Brother Paul O’Donnell, a friend of the Maraachli family, reports that Baby Joseph’s parents are brimming with joy over the child’s progress.
“I would say they think it’s a miracle. It’s absolutely astounding,” declared O’Donnell. “He is on a lot less medication. He is doing phenomenal.”
Naturally, however, doctors are hesitant to predict whether the procedure will actually extend Joseph’s life, but note that it will certainly improve his quality of life.
“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 at Cardinal Glennon.
Joseph’s father, Moe, issued a statement overflowing with gratitude for all the support the family received in the past few months.
"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," Maraachli said. "This has really helped our family through this hard time, to know there is so much kindness in the world."
Joseph’s story drew international attention after doctors at London Health Sciences Centre in Ontario determined Joseph to be in a permanent vegetative state and that his condition was worsening, and therefore opted to remove the child from assisted breathing machinery. Joseph’s parents, who already lost an 18-month-old child to the same condition, opposed the hospital’s decision, contending that by removing the machinery the child would suffocate and be subject to undue suffering.
They pleaded with the Canadian doctors to perform a tracheotomy on their son that would allow Joseph to breathe through a tube in his throat and extend his life up to six months as it did for their 18-month-old, who was permitted to die at home as a result of the surgery.
Joseph’s parents took to social media sites for support, but despite public attention, the London Health Sciences Centre would not budge. The courts proved to be equally unyielding.
Certain that the child was not in a vegetative state, the parents turned to American hospitals for hope, where they found it.
“This is a baby that when his father was talking to him on one side of the room he’d look to his father, and when his mother spoke he’d look to her,” said O’Donnell, who also added that Joseph has thrown temper tantrums like any other child when he is subjected to something he does not like, such as diaper changes.
Fortunately for the Maraachli family, Baby Joseph received the tracheotomy is now home in their care.
The London Health Sciences Centre has not yet commented on the success of Joseph’s procedure.
Photo: Baby Joseph's father, Moe Maraachli, left, walks with a transport team at Cardinal Glennon Children’s Medical Center in St. Louis to a waiting ambulance for a trip to the airport, April 21, 2011: AP Images