Hydrocephalus Story: My Miriam Lynn
My daughter was diagnosed with hydrocephalus when I was about five and a half months pregnant. I was told she wouldn't live past the first few hours and would be a vegetable and would be connected to all the machines.Innerview: Jodi Lawrence's hope is cure for hydrocephalus
"Justin is a miracle. When he was born, we were told to expect a vegetable," she said of the premature, 1.5-pound baby. "My husband and I decided to research and learn as much as we could, and give him the best life possible. "Life with hydrocephalus
My life with this hyrdo began 46 years ago. The doctors told my parents that if i lived past 10 years of age i would be a vegetable (ha I'm not a cabbage). Anyway my parents fought for my treatment. the doctor didn't want to insert the shunt until my first birthday but they ended up doing it at 6 months of age.By "quick," I mean that about ten minutes worth of effort on my part yielded these particular stories of fellow "ex-vegetables" with hydrocephalus. If I wanted to put some more effort into it (and probably will at a later date), I know of several more stories that don't use the "V" word, but include the prediction that the baby with hydrocephalus won't walk, talk, interact or think.
"Vegetable" isn't a word that's in any medical dictionary. Doctors are free to attach any idiosyncratic definition to the word that they see fit.
Personally, what I'm more interested in is are the motives of medical professionals who put this term forward in discussions of the prognosis and options for the newborn in question. These particular stories, even combined with my own "vegetable" story at birth, don't give us a lot to go on in figuring that out.
However, these aren't the only ones that I've come across over the past 15 years. I'd suggest that the term "vegetable" is an opening gambit in which the medical professional wants to move the discussion into one of two areas:
- Storage (e.g. institutional warehousing);
- Disposal (death through withholding or removal of lifesaving measures)
More on this in the future. And if anyone out there reading this blog has their own "vegetable" story, I'd love to hear it. --Stephen Drake
3 comments:
I'm afraid the use of the word "vegetable" always makes me giggle, even during serious discussion. There have been occasions where I have demanded to know which specific vegetable the person is talking about.
I also assume that disabled people who are not "vegetables" are in fact chimeras. I may look human, but I have the heart of an artichoke and the legs of a runner bean.
I am also incredibly suspicious of the idea that parents might be told that their kids would be vegetables. There is the medical condition, Persistent Vegetative State, which is a sort of coma. But you can't imagine a doctor talking about any patient as "a vegetable" - at least not one with any ounce of human decency.
Goldfish,
I am *not* suspicious at all about doctors using the term. I have heard too many of these eerily similar stories too many times.
What I think is occurring is that the actual "personhood" of the newborn, child or adult has been dismissed by the doctor.
Two things happen then --
Personal biases come into play and they not-so-subtly relay that the individual isn't going to have a life worth living (but as a fact rather than a subjective opinion).
Since the newborn, child or adult isn't seen as a "person," the physician's primary focus becomes the *family* rather than the individual. It follows from their own lack of value that what is best for the family is to be freed of the "burden" - through institutionalization or lethal medical neglect.
With all the medical horror stories about the elderly and people with developmental disabilities coming out of the UK, why is this so hard to swallow?
That was a rather clumsily written comment, I'm sorry.
I didn't mean that I thought anyone was lying, I just think it has become a turn of phrase which engenders how people felt about a prognosis and simply got attributed to the doctors (who may well have made them feel that way). In the same way that someone who had made a good recovery from a leg injury might say, "The doctors said I would be a cripple for the rest of my life, but here I am climbing mountains."
The doctor didn't need to use the word if such a person understood "not being full ambulant" as "cripple".
I imagine it is often the case that, presented with an extremely pessimistic view of a person's life-chances, a great long list of all the things a child won't be able to do, these folks hear "vegetable" which is our cultural shorthand for a person with very severe impairments. And certainly when retelling the story, the word is perhaps easier than repeating an entire prognosis.
All of these stories are told in terms of a child beating expectations. The way I read them, the narrator is not objecting to the word "vegetable", but merely explaining that the kid could perhaps walk, talk, meet various developmental goals despite everything. As if being a vegetable was a very real possibility that the child rose above.
That's why I find the word amusing. I have never ever heard anyone referred to as a vegetable, but I have heard many stories of how a person could have been a vegetable. I'm sure the word is used to refer to real people, but far more often it refers to what might have been.
You are spot-on about the implications, and this stuff happens between doctors and families without the use of that word, but I do think what is happening in these stories is a little more nuanced than you suppose.
But it was a very clumsy comment, I didn't have my brain screwed on too tight yesterday.
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