Save Baby Joseph!

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.

Follow the rest of story here, here and here.

15 thoughts on “Save Baby Joseph!

  1. Mathew

    This is a classic example of lack of respect for life among some Canadians. . This is the reason why we all should fight against legalization of Euthanasia and work hard to defeat them in the next general election.

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  3. AF

    You don’t make sense. How can you determine that a tracheostomy has the best risk vs benefit ratio for this patient? Same thing holds for generalizing this case to prolife situations in general. You shouldn’t lobby for something you don’t (and couldn’t possibly) understand. It’s impossible to get all the facts of this case, unless leaked by family to the press, as they are kept confidential by the hospital by law.

    1. jane doe

      so can the public possibly have all the necessary facts to judge this difficult, ethical decision. Best left to the family and doctors.

  4. AF

    By the way, I don’t think withdrawal of ongoing resuscitative therapy fits the definition of euthanasia.

  5. jane doe

    Supporters of “Save Joseph” have no idea and are just involved in the passion of “the cause”. This baby is suffering and deserves to die peacefully without any more pokes and prods.

  6. AF

    Good link, except it really IS about futile care and it appears the article just dismissed this issue. True, a tracheostomy is not a very difficult procedure, but it IS surgery. Risks are multiple and they include infection, bleeding, fistula formation, necrosis of the tracheal wall, and probably many others I’m unaware of. The only benefit I can see is a possibly a continued vegetative state, except it will be at home where Joseph will die of respiratory failure anyway, or from any of the above complications.

    Do you think it matters to a brain-dead infant whether he stops breathing at home or in a hospital? It doesn’t. In this case it appears it only benefits the family’s state of psychological well-being, but in doing so damages what’s left of Joseph’s body.

  7. lisa

    For those of you who are following, here is what is going on…

    I read over the entire legal document, and I still think that the hospital cannot force the parents to consent to treatment for their son. They are still the legal decision makers for him, so their wishes regarding him should be respected. Usually, when someone is dying and there is nothing the medical people can do for them, if they can do something to prolong their life so they have more time with their family, they do it. Joseph’s family is asking that Joseph be able to spend the last few months of his life at home with his family. And the hospital won’t even release his medical records to the US hospital that is willing to take Joseph in! In this case, it’s not a question so much of euthanasia, but who has the right to decide the best quality of life for Joseph. In this case, it’s not the hospital, it’s the parents.

  8. AF

    Lisa, that argument would be very good if Joseph were not brain dead. However it seems that he is, and I think the hospital’s argument is that there’s no “quality of life” issue here for the patient. It seems unfair to the patient to do a tracheostomy which will not benefit yet may harm the patient, but may only help the family psychologically. Withdrawing ventilation from a brain dead patient is not “killing” anyone. However, complications from tracheostomy may lead to the patient’s death.

  9. lisa

    In Joseph’s case, he is not “brain dead” but the doctors have deemed him to be in a “vegetative state”. Two different things. Brain dead is the cessation of all neurological activity, and this is not the case with Joseph. And even the diagnosis of “vegetative state” seems to be under question because of the video taken by the parents showing Baby Joseph responding to tactile stimuli. It seems that is the determining factor in the whole issue. I also have an issue with the hospital deciding what is deemed “quality of life” for a patient, especially since the parents ought to have decision making power in the treatment plan of their child.


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