Joseph Maraachli's physicians are willing to send him home, but with an important catch: they still refuse to perform the tracheostomy that allowed a sibling of Joseph’s who had a similar condition to live another six months at home. Instead they will simply return Joseph home, and then remove his ventilator, after which he will almost certainly die within a matter of minutes. This solution is unacceptable to the family.
“They need to do a tracheostomy,” said Dr. Paul Byrne, an Ohio neonatologist with nearly five decades of experience. “If the baby is stable otherwise, and has a tracheostomy, then the baby can be taken care of at home.”
Joseph Maraachli
London Health Sciences Centre defended their refusal to perform the tracheostomy, calling the procedure, which involves inserting a breathing tube through a tiny slit in the throat, “invasive,” and said it is “not a palliative procedure. It is frequently indicated for patients who require a long term breathing machine,” they wrote, “This is not indicated for Baby Joseph because he has a progressive neurodegenerative disease that is fatal.”
But Dr. Byrne said, “there’s no case” when a child is on a ventilator where the tracheostomy wouldn’t be indicated. He called the attempt to have the state remove Joseph’s ventilator “terrible, absolutely terrible,” and insisted that in his fifty years in neonatology he’s never removed a child’s ventilator. “I’ve never seen a time to turn off a ventilator. 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.”
He also criticized the common phrase “life support,” saying, “Life is either there or it’s not there. You don’t have to hold up the life. What we do in medicine are actions ... that support the vital activity of respiration. Assuming doctors can do something to support the vital activities, we ought to do them,” he explained. “And a tracheostomy ought to be done, and the baby ought to continue on the ventilator.”
Though doctors have said Joseph is in a “vegetative state,” Dr. Byrne called it a “made-up term” similar to the notion of “brain death,” which he said was invented “simply to get beating hearts for transplantation.” LifeSiteNews
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