I am thrilled to share this powerful essay by physician mom K. Hope Wilkinson. In "I'd Rather Be Dead", published in the October 2019 issue of the Journal of Graduate Medical Education, she writes honestly about the attitudes she encountered after the birth of her special needs daughter.
The opening paragraph draws in the reader:
When my daughter was born, something was clearly wrong. She was just shy of term, but she weighed only 3.5 pounds. Her initial Apgar score was 0, and she was coded, intubated, and resuscitated. On her fifth day, the neonatologist did brain magnetic resonance imaging (MRI) “for prognosis.” Specialists pointed out to us everything that was wrong: the way she flapped her hands, the tilt of her ears, the size of her chin, the crease of her palm. They constantly reminded us what most babies do: smile, lift their heads, not just be little lumps. Eventually they diagnosed her with a rare chromosomal disorder, one that is barely described in a few publications. The kind pediatrician told us we would sing to her, we would read her stories, and she would go to school because we do those things for all children, but they didn't know what else her future held...
We want to read the rest, we want to know what happens. And, we need to read the rest, because her message to us as healthcare providers is very important. I know that the author made a considerable effort to craft this piece, and that it was not easy for her to share her story. Please check out the essay and let this brave mother in medicine know that we appreciate her hard work and perspective!
This is phenomenal. I've had these thoughts a lot; there was a perspectives piece in JAMA a year or so ago, by a resident about caring for children who had been victims of non-accidental trauma or were born with neonatal abstinence syndrome, and the way he characterized their lives and their future prognosis was so dismal. It's hard to hear that stuff and not look at my own kid, and think "you have no idea how amazing they are." It's true when they say that the sum of anecdotes isn't a randomized controlled trial, but one story feels so much more important when it's your kid and your experience. Super powerful.
ReplyDeleteI agree! We need to see the intrinsic value of human life, and recognize there is a wide spectrum of quality of life. As a resident, I did not get it. I have a special needs kid too, and only after him have I been able to understand.
DeleteSuch a beautiful essay. I admit that I thought like the residents who made those comments in the ICU. I even remember thinking like that when a friend's daughter suffered a severe brain injury from a fall (she's now doing ok after lots of rehab). It all changed when I became a mom... I realized that all lives are sacred and special. Everyone is someone else's baby.
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Thank you so much for sharing this essay! It truly speaks to me.
ReplyDeleteAnd I can see how that “I’d rather be dead” way of thinking can lead so many doctors, residents and medical students into suicide.