Robert Chelsea turned down the first face he was offered. It was a
fine face, one that could have taken him off the transplant waiting
list after just a couple of months. But Chelsea—severely disfigured
after a catastrophic car accident five years earlier—was in no hurry.
He’d gotten used to tilting his head back so food and water wouldn’t
fall out of his nearly lipless mouth. He knew how to respond
compassionately to children who stared in shock and fear. The face,
offered in May 2018, had belonged to a man with skin that was much
fairer than what remained of Chelsea’s—so light that Chelsea, who is
African American, couldn’t bear the thought of becoming “a totally
different looking person.”
Chelsea’s doctors understood his hesitance. Face transplants in
general are rare. Since the first partial one was performed in France
in 2005, fewer than 50 have been completed worldwide. A new patient
joining the ranks is always noteworthy, but Chelsea’s case carries
even more weight than usual. Because he is the first African American
to receive a full face transplant, Chelsea’s treatment is expected to
have ripple effects that transcend his case. Disparities in the
medical system that cause black Americans to die at higher rates than
whites of so many things—like heart disease, cancer diabetes and
HIV/AIDS—have also produced gaps in organ donation and
transplantation. Widespread mistrust of the medical system has made
many African Americans wary of tissue donation, contributing to donor
shortages; in turn, only 17% of black patients awaiting an organ
transplant got one in 2015, compared with about 30% of white patients.
Chelsea’s accidental role as the literal and figurative face of black
organ transplantation is likely to help chip away at those
disparities. “Having a visible, tangible reference, especially for
African Americans … is so needed,” says Marion Shuck, president of the
Association for Multicultural Affairs in Transplantation (AMAT).
Sharing personal experiences publicly, Shuck says, could inspire
potential donors with a clear example of a transplant’s positive
impact. Though facial donation is rare, Chelsea’s story could
encourage black Americans, and their families, to donate kidneys,
livers or lungs, saving lives and reducing wait times across the
country.
It took more than a year for Chelsea to get a second call—the one that
would land him in a bed at Boston’s Brigham and Women’s Hospital,
receiving a new face that was a near perfect skin-color match, and
that made him both the first African American to undergo a face
transplant and, at 68, the oldest recipient ever. “Morning by morning,
new versions [of me] unfold,” Chelsea said on the day he was
discharged from the hospital in August, nearly a month after surgery.
“[But] I feel like myself.”
Chelsea was having car trouble one Monday night in August 2013, so he
pulled onto the shoulder of a highway outside his home near Long
Beach, Calif. Soon after, a drunk driver slammed into his car, and it
burst into flames. Chelsea, a sales manager for a rubber-stamp
business, was rushed to a hospital with third-degree burns covering
almost half his body.
After being transferred to the University of California Irvine Medical
Center, Chelsea spent four months drifting in and out of consciousness
as doctors fought to save his life. He had 18 surgeries in that
time—mostly skin grafting for his burns, but also abdominal operations
to treat serious gastrointestinal complications that had developed as
his body struggled to stay alive. Blood pressure medications shunted
blood flow to his heart and away from his extremities, leading to
tissue death in his lips, nose and fingers. One of his surgeons, Dr.
Victor Joe, called him “one of the sickest patients we’ve had.”
Chelsea left UC Irvine in December 2013 with his life—but by the end
of his recovery he would lose his lips, the end of his nose, several
fingertips and two-thirds of his intestines. His face was severely
scarred, and his hands were covered in cadaver skin that matched
Chelsea’s skin tone but never quite mimicked its texture; Chelsea
called it his “snakeskin.” All told, he would eventually carry the
skin of three different people. An organ donor himself before the
accident, he had no idea how difficult replacing his skin would prove
to be.
The barriers went up long before Chelsea was born. In 1932,
researchers from the U.S. Public Health Service launched a study at
Alabama’s Tuskegee Institute that would change the American medical
system for decades to come. The trial was covertly designed for
researchers to observe the effects of untreated syphilis over the
course of four decades. Six hundred black men, mostly share-croppers,
enrolled in the trial, lured by the promise of free transportation,
meals and medical care. About two-thirds of the men had syphilis, and
half were given the then standard treatment of arsenic and mercury.
The other infected men were given no treatment at all—even after
penicillin was discovered to be an effective syphilis therapy in the
1940s. They were left to die; pass the disease on to partners and
children; or develop complications like heart failure, mental
instability and blindness.
When the Associated Press exposed the study in 1972, public outcry was
immediate. Survivors and the families of deceased patients won roughly
$10 million in a 1974 settlement. Two decades later, in 1997,
President Bill Clinton apologized for Tuskegee, calling it “deeply,
profoundly, morally wrong.” But the wound was deep, and it would scar.
“African Americans still do not believe the health care profession
will take care of them,” Shuck says.
That mistrust wasn’t built on Tuskegee alone. In the 1800s, enslaved
people were commonly drafted as unwilling, unanesthetized subjects for
medical experiments, and their deceased bodies were frequently
dissected. Even after slavery was abolished, black patients were often
turned away by white doctors and hospitals. When they did get
treatment, it wasn’t always ethical. Henrietta Lacks famously had her
fast-replicating, cancerous cervical tissue taken without consent in
1951; the cells eventually became a lucrative cornerstone of medical
research, kick-starting a decades-long debate over informed consent
and who profits from scientific advancement. Such incidents, and
numerous others like them, still loom large, especially in a world
where many physicians, according to one 2017 research review,
implicitly favor white patients. “The whole medical system follows
along with the racism that the country was built upon,” says Dr.
Vanessa Grubbs, a nephrologist at the University of California, San
Francisco.
Famous historical examples mix with families’ more contemporary,
personal stories of mistreatment, leaving many African Americans
skittish of doctors, says Dr. Damon Tweedy, an associate professor of
psychiatry at the Duke University School of Medicine and the author of
Black Man in a White Coat. “There’s some remnant of that that you
internalize,” he says. Though he’s black himself, Tweedy says patients
have asked if his hospital is “experimenting” on them or using them as
“guinea pigs.”
It’s perhaps no surprise, then, that many African Americans are
hesitant to volunteer for medical -studies—often an important first
step in developing effective treatments. A ProPublica analysis of Food
and Drug Administration data found that in many trials for drugs
approved from 2015 to 2018, less than 10% of research participants
were black. (The research community is working to close such gaps
through initiatives like the National Institutes of Health’s All of Us
trial, a million-person study trying to recruit under-researched
populations.) As a result, doctors today know far more about white
bodies than about black bodies, even though black Americans report
higher rates of conditions like Type 2 diabetes, heart disease and
many cancers—largely because of centuries of structural inequities
that have, among other consequences, left more than 10% of black
Americans without health insurance compared with about 6% of whites,
and 21% of black households without secure access to quality food
compared with less than 10% of white households.
Understanding that complicated history is crucial to understanding the
state of organ transplantation in the U.S. today. Black patients, on
average, face longer waits for major organs like kidneys, lungs and
hearts than white patients, meaning more may die before they get the
surgeries they need. That’s in part because African Americans, who
make up about 13% of the U.S. population, account for roughly 30% of
the transplant waiting list, according to federal data. By contrast,
about 65% of deceased donors are white, and white Americans make up
only about 40% of the waiting list.
Higher rates of chronic disease among African Americans mean both that
a disproportionate number need transplants, and that fewer have living
family members healthy enough to donate organs like kidneys and
livers. Even if they do, Shuck says, “we don’t want to ask our family
because we don’t want to put them at risk, so we languish longer.”
Religious and philosophical beliefs may also play a role, says Dr.
Charles Bratton, a transplant surgeon at Loma Linda University Health
who has studied donation disparities. Jehovah’s Witnesses, 27% of whom
are black in the U.S., do not accept blood transfusions, which can
also dissuade them from being involved with organ transplants. Members
of some religions that believe in resurrection, like Southern
Baptists, may also want their bodies to be whole when they die, even
though most religions allow organ donation. Finally, people in the
U.S., unlike those in some European countries, have to actively opt in
to organ donation rather than opting out, further depressing donation
rates. All told, according to the most recent federal survey on
attitudes toward organ donation, only 39% of black Americans’ driver’s
licenses marked them as organ donors, compared with almost 65% of
white Americans.
“Do you see the way they look at me? It’s cute. They’re curious,”
Chelsea said the first time we met, in November 2018, months before
his surgery. He’d told me to drive straight from the airport to his
gym in Victorville, Calif.—it was Monday, and he always worked out on
Mondays. From there, we went on an errand to Metro-PCS, then to pick
up tacos for lunch. People stared, but Chelsea was good–natured about
it. “I don’t blame them,” he said. “It’s scary. It’s like I’m wearing
a Halloween mask.”
Five years after his accident, Chelsea insisted that his appearance
didn’t bother him, in large part thanks to the deep-seated Christian
faith that helped him through his recovery. He also joked that he was
“no knockout looker” before the accident, though friends and family
remember it differently. His acceptance was so unflinching, in fact,
that when Dr. Bohdan Pomahac, director of plastic-surgery
transplantation at Brigham Health, first approved him for a face
transplant, Chelsea wasn’t sure he wanted one at all.
Chelsea’s attitude was exceptional. Losing one’s face—a person’s
introduction to the world—is psychologically scarring for most who
experience it. Face-transplant recipients are required to undergo
extensive counseling to ensure they’re prepared to accept their new
appearance. It can be especially difficult when one’s racial identity
is also at stake. While a black patient awaiting a kidney or heart
doesn’t need a black donor, a complexion match is considered crucial
for visible transplants, to preserve as much of one’s identity as
possible.
Physical appearance is far from the only determinant of racial
identity, but it’s certainly a factor, says Jessica DeCuir-Gunby, a
professor at North Carolina State University who studies the topic but
has not worked with Chelsea. Accepting a face from a donor with a much
lighter skin tone could present a nuanced set of emotions, she says,
since black identity exists across a spectrum of colors, hair textures
and facial features. A drastic change in appearance can unmoor someone
from his or her identity, potentially resulting in psychological
trauma, she says. Dr. Sheila Jowsey-Gregoire, a transplant
psychiatrist at the Mayo Clinic who has not worked with Chelsea, says
that while most face-transplant patients have done the hard work of
accepting that they’ll never look exactly like they once did, altering
their racial identity could lead to unforeseen negative consequences.
The need for a precise color match further shrinks an already small
pool of potential donors: in the federal survey on organ donation,
only about 41% of black respondents said they’d be at least “somewhat”
willing to donate a face, vs. about 61% of Caucasian respondents. Even
Chelsea, who is largely un-interested in the superficial aspects of
appearance, balked at the prospect of accepting a face so much lighter
than the one he knew.
It wasn’t just the possibility of a stranger in the mirror that gave
Chelsea pause. Organ-transplant patients need to take immune-system
suppression drugs for the rest of their lives to keep their bodies
from rejecting their donor organs. His health had been stable in the
years after his recovery from the accident, and the transplant would
take him back to a world of constant doctor’s appointments and
medications. And while Chelsea’s surgery would be performed for free,
thanks to a grant Brigham and Women’s received from the Department of
Defense to test a less cumbersome post-transplant immune-suppression
regimen, his family would still have to pay some travel and caretaker
expenses associated with the surgery. When NYU Langone last year
performed the first face-transplant covered by commercial insurance,
the hospital estimated it would have cost about $1.5 million out of
pocket. Even without taking on any of those costs, Chelsea’s family
had to launch a GoFundMe to pay for miscellaneous expenses, raising
more than $75,000. Even more conventional transplants can be
expensive. Tweedy says the financial burden of becoming a living donor
and recovering from an invasive surgery, which often requires time off
from work, discourages lower-income patients—who tend to be
disproportionately of color—from participating in transplants.
Chelsea’s 30-year-old daughter Ebony was even more concerned than her
father. Seeing him in critical condition after his accident was like
“going to a movie theater and watching the scariest movie that they
had out, and you replayed it over and over and over,” she says. “You
went through all that, and all of a sudden you want to go over here
and [have another procedure]? Any surgery has complications.”
But Chelsea ultimately wanted to eat and drink normally, to spit, to
swallow a pill, to close his mouth—and, most of all, he said, to kiss
Ebony on the cheek. Eventually he decided those promises outweighed
the risks.
Chelsea’s surgeon was undaunted by the year-plus search for a donor,
even after coming so close with the first face last spring. “All it
takes is one. Sooner or later you will find one,” Pomahac said about
six months before ultimately finding the donor face that would become
Chelsea’s. Last year, less than 7% of the organs procured in
overwhelmingly white New England, where Brigham and Women’s is
located, came from African-American donors. While Pomahac and his team
could theoretically accept a donor organ from any region, the
hospital’s policy dictates that travel to the donor site cannot exceed
four hours, in part to preserve the function of the organ. To look
outside New England—as Pomahac and his team eventually did—would
require finding a location within easy flying distance of Boston.
Chelsea never second-guessed his decision to turn down that first
face—but he also couldn’t have guessed how long the search would drag
on. He and Pomahac had used a 1-to-18 scale to discuss potential
donors’ complexions—1 being the lightest—on which Pomahac says Chelsea
is a 15 or 16. They originally looked for donors falling from 8 to 16
but, after months of no luck, Chelsea eventually agreed to consider
donors as light as 5. Even that didn’t work.
Then, this spring, Pomahac encouraged Chelsea to consider a full
facial transplant instead of the partial one they’d planned to replace
just the lower portion of his face. Pomahac was mostly focused on
cosmetics, but Chelsea and his family hoped the decision would also
speed up the search process by eliminating the need to blend exactly
with Chelsea’s surviving skin, making imperfect matches less obvious.
Chelsea agreed to the full transplant—and finally, more than a year
after he joined the transplant waiting list, he got the call in July.
His doctors had found a match with a near identical skin tone. He had
24 hours to make the biggest decision of his life, based only on
descriptions of the donor’s complexion, age and medical risk factors,
then fly from Los Angeles to Boston for the surgery. “I had to
believe,” he said that day. “I was just hoping that it was a legit
call.”
In another state, another man had just received a very different phone
call. Shortly after learning that his 62-year-old brother had died
suddenly, James, 51, was approached by the Gift of Life Donor Program
about donating his brother Adrian’s internal organs—and his face.
James didn’t know his brother’s wishes but was staunchly in favor of
organ donation himself after serving in the Air Force, where he says
the practice was valued. He knew that Adrian—a talented athlete and
guitarist who loved to play Hendrix, worked in construction and was
always “ready to light up a room”—would want to help someone else. “He
would give the shirt off his back for anybody,” James says. After
calls to his five other siblings, James decided to move forward with
donation, comforted by the fact that part of his older brother would
be “still here and on this earth, [so] he lives on.” He had no idea
that his brother’s would be the first African-American face ever to be
transplanted.
To Chelsea, the face he would receive was anonymous. But the loss
another family had to suffer to give him a new beginning was the only
subject that made him grow somber in the chaotic hours before surgery.
When Chelsea emerged from the 16-hour surgery, his godson, Everick
Brown, could focus on only one thing. “I was like, ‘Look at those
juicy lips,’” Brown laughed. “‘He’s going to be happy.’” Even in the
early hours of Chelsea’s recovery, before the swelling had gone down,
Brown could tell Pomahac and his team had done a good job. Aside from
his lips, Brown said, his godfather looked shockingly similar to the
way he did before. “It was a joy,” Brown said. “It’s the first time
I’ve used the word miracle.”
By the second day post-op, Chelsea’s heaviest pain medication was
Tylenol. Within 10 days, he was eating, talking and breathing on his
own—and though Pomahac says the nerve-rich lips never regain full
function after a transplant, Chelsea’s dream of kissing his daughter
on the cheek is within reach.
It’s not only Chelsea’s life that will change. Tweedy says stories
like his can help rebuild trust with the medical system. “Sharing,” he
says, “can go a long way to healing.” Research bears that out: a 2013
study on encouraging organ donation found that successful approaches
typically “comprise a strong interpersonal element that focused on the
particular population’s concerns, delivered by members of the local
community.” A number of awareness days and weeks—including National
Minority Donor Awareness Week in August—are meant to boost donation
rates, as are initiatives like the United Network for Organ Sharing’s
ambassador program, which encourages donors, recipients and those on
the waiting list to speak publicly about their experiences. James
recently decided to take on the role informally, after learning of the
historical significance of his brother’s donation. “I think it’d be a
dis-service to stay anonymous,” he says.“Hopefully this story can put
that in a light for others to donate.” Changes meant to bring medical
equality are also taking root more broadly. A growing number of
medical schools, for example, are waiving tuition to attract a more
diverse pool of doctors in training, among other goals.
Before his surgery, Chelsea began establishing Donor’s Dream, a
nonprofit meant to encourage and provide information about organ
donation. Even in the grueling weeks after surgery, as the swelling
came down, his speech and vision improved and his new skin started to
glow and sprout hair, he felt that the experience was bigger than
him—one that would evolve into a future he couldn’t yet imagine.
“I was concerned about humanity way before this surgery,” he said
about 10 weeks after the operation, after moving into a temporary
apartment in Boston, where he would complete weeks of follow-up care.
“We must help one another. That’s the way I felt, and this experience
has only validated that even more.” Culled from NEW YORK TIMES
