Hospital Informs Parents Their Baby Is Being Taken Off Life Support Via Letter
By Karen Ballum on January 21, 2010
BlogHer Original Post
Isaiah James May was born in October. He is three months old. When he was born, the umbilical cord was wrapped around his neck, depriving him of oxygen. He inhaled both amniotic fluid and fecal matter. He is being kept alive by a ventilator that breathes for him and an IV tube that feeds him. These are the facts that I read. Then I got to the part that stumps me. His parents were informed via letter that the hospital would be removing him from life support. I looked up from my computer in disbelief and said, "I didn't even know they could do that."
I turned back to my computer and continued to read. His mother, Rebecka May, says that after Isaiah was born she was told that he wouldn't do many things. She says she was told that Isaiah has irreversible brain damage, that he would never move, never grow, never urinate. She says she was told he would not live past three days. Isaiah is now three months old. He has urinated, he's gained weight. Isaiah has moved. Was it "real" movement? A spasm? We don't know. Isaiah has done things his mother was told he would never do. So she was stunned when she received the letter from the Stollery Children's Hospital, where he is being treated, informing her Isaiah was slated to be removed from the machines that are keeping him alive.
"The diagnosis is unchanged; your son suffered severe anoxic brain injury at birth and has irreversible brain damage. There is no hope of recovery for Isaiah."
The letter went on to say, "Accordingly, it is with sadness that we are advising you that your treatment team will discontinue mechanical ventilation support to Isaiah after 2 p.m. Wednesday, January 20, 2010."
- CTV news, January 20
Rebecka and her husband, Isaac, hired a lawyer and went to court to ask for a 90-day injunction. Isaac, Isaiah's father, says they do not want to keep Isaiah on life support indefinitely, but that they want to do the best for him. They want to make sure that the best thing for Isaiah is that he be taken off the ventilator. They don't want to give up on him while there's still hope, while he's doing things that they were told he'd never do. They want more time.
It could be asked if their hopes are rational. Can a parent in this situation make a rational decision? I'd be surprised if they could. I'm not a parent, and I can't imagine what it's like to be in that position. I know that if Isaiah were my loved one, I would not be rational. Love isn't always rational. Hope isn't always rational. So do we turn these decisions exclusively over to our doctors? They aren't always right, either. I'm sure that you, like I, have heard too many stories of people who have lived when the doctors said there was no hope.
What disturbs me about the story of Isaiah May is not that his doctors and medical staff think Isaiah should be removed from life support. I really do believe they think it is the best medical advice they can offer. I believe both they and Isaiah's family both want what is best for him; they just don't agree on what that is. What disturbs me about Isaiah's story, as it is being reported, is that the Mays were not advised that Isaiah should be removed from life support, but told that he would be removed from the machines that were keeping him alive. But it's also how they were informed - by letter. Yes, a letter. Listen, I'm about as far from a medical or legal professional as you can get, and I'm sure there are legalities at play (paper trail, documentation, etc.), but from where I sit it seems positively cold-hearted.
Maybe as I sit here and read this story from different news sites I'm not getting the full story. Maybe none of us are. Maybe there were discussions. Maybe the medical team and the family agonized over this together and it was finalized with the letter. Maybe the letter was the bureaucratic dotting of the "i's" and crossing of the "t's." Maybe. It's not the impression that you get from the news article. I got the impression that the parents were gobsmacked when they got the letter, and I felt that way reading their story.
Alberta's Court of Queen's Bench Justice Michelle Crighton gave the family and lawyers of Isaiah until January 27 to find an independent expert who can help determine if there is hope for Isaiah or if he is truly brain dead and will never thrive. I hope that all parties can come to an agreement about what the best course of action is for Isaiah, and that they can discuss it. And I hope that the final decision does not come by letter. Isaiah deserves better than that.
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