—Even losing you (the joking voice, a gesture
I love)— …
Elizabeth Bishop, “One Art”
Sensational Surgery: What does ‘success’ look like after face and double hand transplant?
By Emily Herrington
The bird with the unusual beak is back at our feeder. When my partner, Paul, and I first noticed her last year, we were delighted because for days we’d been admiring the bright red male cardinal who is her mate, and her arrival completed the pair. We feel especially fond of these birds, because even in the evening when all we can make out are bird silhouettes, her strangely sticklike lower mandible is recognizable as she cracks sunflower seeds and he keeps watch a few feet away.
Although the interesting beak structure of the female cardinal gives this pair of birds added observability and ultimately, affection from our point of view, we wonder how the physical difference might affect her ability to thrive. For example, is it necessary for her to modify instinctual gestures of nest-building or chick-caring to accommodate her protruding jaw? Does he—can he—help?
Care and Caring
The topic of this blog post is hand and face transplants, specifically, the face and double hand transplant recently announced and revealed in New York, a first of its kind. I start with a brief reflection on birds because their habits of pairing and caring help me think about care as a human occupation. As a signifying trait or hallmark of our species, the evolutionary significance of human care behavior is not as commonly discussed as our bipedal legs, big brains, and free hands; this is, in part, because the fitness value of the human mind-and-hand connection and the hunting-gathering value of walking are easy to conceptualize, and care is not.
As a topic for discussion, study, critique or action, caring is complex, many-sided: it does not fit well under a single medical or academic disciplinary category. Care occurs in diverse locations and situations; the need for effective and attentive care is ever-present in our institutions of medicine, education, and community development, but care is also an element of successful engagement in “mundane” household interactions and conversations, the essential daily nurture of human bodies, minds, dwellings, and relationships.
Professionals of caring, like nurses and therapists, enjoy less visibility and thus, less recognition for their essential life-supporting work than surgeons and biomedical scientists do, the irony of these circumstances being that innovative programs in surgery and biomedicine that do not attend to the psychosocial care needs of patient-participants are more likely to fail.
The extraordinary value of the ordinary gestures
This is true in the field of reconstructive organ transplantation, also called “vascularized composite allotransplantation” or VCA, where an immensely complicated and difficult surgery is only the beginning of the journey towards success. Following transplant, itself, recipients of a VCA perform grueling daily care activities (up to four hours a day of exhausting and sometimes painful physical therapy and tissue massage) and maintain fastidious discipline taking immunomodulatory medications three to four times a day that can make them tired, irritable, nauseated, or chronically ill.
These risks and side effects of having a VCA are why—although anyone undergoing evaluation for a VCA has lost significant access to their world of people and things through amputation or facial refiguration—this fact alone does not qualify them for candidacy in reconstructive transplantation. Some amputees will vastly prefer prosthetics or their own adaptive strategies to the risk-state of life under immunosuppression.
For others, the choice is labored but clear, because a VCA transplant is the only chance they will ever have to regain their sense of human touch or social function. My journalist colleague David Dobbs describes the gravity of decision-making in VCA best when he wrote in an article for WIRED, “Is taking dangerous drugs for the rest of one’s life worth the satisfaction of tying a shoelace or moving a strand of hair from a child’s face?” Because the temporarily able-bodied (“TAB” for short) majority of us have not lost or even come close to losing what a VCA candidate has lost, it can be difficult to grasp the extraordinary value of the ordinary gestures that allow us to relate to each other and to care and do for ourselves in the most basic ways.
Individual Differences Matter
The reconstructive transplant patient will never be a standard “type” for the reason that individual differences matter a lot when determining the answer to the usually uninteresting question, “Do you need a hand?” Approximately ten years ago when I first began studying VCA ethics and outcomes, I interviewed doctor scientists in Louisville, Kentucky, where these operations were pioneered. When illustrating the possibilities and limitations of life after hand transplantation, almost every member of the Louisville team at some point gave me the curiously apophatic analogy, “Our patients aren’t going to be concert pianists, you know.”
The commitment made by patient families in VCA to care for the health of a new hand or face is indefinite or lifelong, much like the commitment made by expecting parents when they bring a child into the world. The idea of caring for a newly donated hand or face as one would care for an infant baby, is one that I have heard from multiple hand transplant patient families on separate interview occasions. Something in this metaphor about the unknowability of the upcoming experience, the real possibility of pain and failure and the uncanny beauty of the possible rewards—resonates with them.
“Birds are beautiful,” writes the ornithologist Richard Prum, echoing Charles Darwin when adding, “because they are beautiful to themselves.” Affection, cooperation, and the cognates of care are, among animals, easy to notice and admire—even from the individual-fitness-saturated focal point of western scientific culture. For the man rehabilitating after face and hand transplant surgery in New York, whose name is Joe DiMeo, success is not an outcome of surgery but the daily series of care gestures that he and his loved ones choose to make each and every day.
Further reading:
- Articles on VCA
- David Dobbs – The Devastating Allure of Medical Miracles (longform feature on HTx in USA)
- AMA Journal of Ethics – What’s Missing in Our Thinking About Quality of Life in VCA? (collection of papers on the evolving ethics of VCA)
- Disability Studies and Philosophy
- Ian Marcus Corbin – Americans, Stop Being Ashamed of Weakness (editorial on care and evolution)
- Georgina Kleege – The Tenacious Life of the Hypothetical Blind Man
- Rosemarie Garland-Thomson – Staring: How We Look
Emily Herrington is a writer, teacher, and oral historian of hand transplantation living in Pittsburgh, PA, with her partner Paul and a cat named Iago. She holds a PhD in Communication and an MA in Bioethics from University of Pittsburgh and an MS in Science Writing from MIT.
The image, ‘Help (ASL Sign), was generously provided by Josh Gates. Gates is an artist based in Portland, Oregon.