by Elizabeth Tanguay
Joseph Maraachli is a one-year-old baby who depends on a ventilator to live. He is dying of an undiagnosed neurodegenerative disorder. His parents, who lost a previous child to a similar disease, want the doctors to perform a tracheotomy, like they did for their daughter, to enable them to care for their dying son at home. The hospital refused and has instead tried to force the parents to consent to removing the ventilator. The family has fought back courageously, and right now they are trying to get baby Joseph transferred to another hospital where he will get the treatment he needs.
As a nursing student, it seems to me that the parents shouldn’t have to fight to try and provide comfort care for their baby so he can die with them at home. The doctor said that the tracheotomy would be risky and that Joseph would suffer; however, in front of the tribunal, the doctor stated that Joseph couldn’t feel pain and was in a permanent vegetative state; he didn’t respond to stimuli. However, as this video shows, Joseph is not vegetative, as he is moving to his parents’ stimuli. I can’t help asking myself: what is the hidden agenda here? Why can’t the relatively simple and humane request of the parents be granted? They are, after all, the first decision-makers for treatment for this baby. While I don’t have all the medical facts of the case, as a sister, if my little brother were dying and there was nothing more the hospital could do for him, and there was a way to make him comfortable at home, I would want that. The Maraachlis aren’t asking for a miracle: they are asking for good palliative care. If you are interested in supporting the Maraachlis as they go through this ordeal, please join the “Save Baby Joseph” Facebook group or go to any of the articles linked to here and scroll down to see how you can help.