The family of a 13-month-old baby boy says they are appealing the decision by a Canadian hospital to not allow him to have a tracheotomy so they can bring him home as they did eight years ago with their baby daughter Zina.
Baby Jospeh Maraachli is the subject of controversy as his parents are fighting a hospital that wants to remove his breathing tube. They want the boy to be able to die peacefully at home with his family, but the hospital will not perform the tracheotomy. Instead, they asked Ontario’s Consent and Capacity board for permission to remove the breathing tube and a judge recently agreed with the doctors’ position.
Over the weekend, the family’s lawyer, Mark Handelman, said the family plans to appeal that decision.
“We have 30 days from [the judge’s] decision within which to launch an appeal, but I don’t think that any delay is in Joseph’s best interests,” he told the CBC. “We are making our decisions as quickly as we can.”
Also over the weekend, the hospital released a statement intending to make itself look better in the media by saying it has not prevented Baby Jospeh’s parents from taking him home — only that it has not agreed to performing a tracheotomy.
London Health Sciences Centre said not agreement has been reached between the parents and the hospital but added that it “is and always has been willing to organize and pay for a medical transfer home to Windsor for Baby Joseph, accompanied by LHSC physicians and staff.” The transfer would not involve performing a tracheotomy, which the parents want because they believe it will alleviate Joseph’s suffering as he dies from the condition that will ultimately take his life.
“It is frequently indicated for patients who require a long term breathing machine,” the hospital said, adding that a tracheotomy is not “palliative care.” “This is not indicated for Baby Joseph because he has a progressive neurodegenerative disease that is fatal.”
“Medical, legal and ethical decisions in this case were made in the best interests of Baby Joseph and are supported by Ontario’s Consent and Capacity Board, the lawyer for Baby Joseph appointed by the Board, Ontario’s Superior Court of Justice and other medical experts from outside institutions,” said the LHSC release.
But Dr. Paul Byrne, an Ohio neonatologist who is the president of the Catholic Medical Association, says a tracheotomy is necessary.
“They need to do a tracheostomy,” he told Lifesite this afternoon. “If the baby is stable otherwise, and has a tracheostomy, then the baby can be taken care of at home. Assuming doctors can do something to support the vital activities, we ought to do them. And a tracheostomy ought to be done, and the baby ought to continue on the ventilator.”
“I’ve never seen a time to turn off a ventilator,” he added. “If a baby has a disease process that’s so bad that they’re going to die, then they die on the ventilator anyway. So you don’t have to stop the ventilator.”
Meanwhile, Handelman, the attorney for the family, says the hospital has stepped up security in a way that has made it difficult for his parents and their family, friends, and supporters to see Joseph.
“It’s … not beneficial to Joseph or his family to have to have security in a pediatric critical care unit,” he told the CBC. “It also interferes with rights of other families to visit their very, very ill children. It’s wrong, I think it’s inappropriate and it should stop forthwith.”
Father Frank Pavone, who became known as the “Terri Schiavo Priest” for his role in trying to save the life of a Florida woman in 2005, has joined the fight to save Baby Joseph and says he will pay for a medical transfer to a hospital willoing to do the procedure.
Terri Schiavo’s family is already involved helping Joseph’s parents.
Doctors at Children’s Hospital say the neurodegenerative disease has left Joseph in a vegetative state, but they have released video footage showing the child responding to his family.
