Face transplant patients endure a long and painful journey — and it’s even worse for black patients
Like other patients who have sought face transplants, Robert Chelsea was injured in a horrific accident. A drunk driver plowed into his car on a Los Angeles freeway in 2013. The car exploded and the ensuing fire severely burned Chelsea’s body and face.
But unlike the other 15 men and women who have undergone face transplants in the United States, Chelsea is black. And that has complicated the search for a new face for Chelsea.
Race matters little when it comes to kidney, liver, and heart transplants. But with faces it’s significant; there are simply fewer black donors than white donors. And, doctors said, blacks have a far wider range of skin tones than whites. Surgeons must find a donor in a relatively small group whose skin color is a fairly close match for Chelsea.
His nine months on the waiting list is already twice as long as average at Brigham and Women’s Hospital in Boston, where surgeons have performed eight face transplants in the past decade.
“It could be a month or two months or two years,’’ Chelsea said in an interview. “I have to be ready to go in 24 hours, but you never known when a donor will come forward.’’
Steven Averhart, family services manager for New England Donor Services, which oversees organ donation in the region, said the nonprofit is working hard to find Chelsea a good match. “We are hopeful and confident that at some point in time he is going to get his wish,’’ he said.
In addition to being the first African-American face transplant recipient, at 68, Chelsea would also be the oldest.
The car accident left Chelsea severely disfigured. He needs lips — his were completely burned off and he cannot smile or eat normally. He also lost part of his nose and left ear, and his left eye is damaged.
Surgeons plan to provide a partial face transplant for Chelsea, sewing on the lower half of a donor’s face including chin, lips, nose, and part of the cheeks. They also will transfer muscles and nerves, allowing Chelsea to eventually move and control his new face.
Doctors will not be able to fix Chelsea’s ear and eye, said Dr. Bohdan Pomahac, director of plastic surgery transplantation at the Brigham.
Brigham surgeons registered Chelsea for a transplant last May. A black family came forward with a potential donor soon after he was registered, but the person’s skin color was too light to seamlessly match Chelsea’s darker skin, Pomahac said.
The other 15 face transplant recipients in the United States have been white, he said. Discussions about skin color matching arose once before at the Brigham, when an Hispanic family came forward with a potential donor for a white patient. Ultimately, the family decided against face donation.
Surgeons in Philadelphia worried about a similar obstacle matching skin color in 2015 when they decided to transplant two hands from a black donor onto Zion Harvey, an 8-year-old African-American boy. Harvey had lost his hands and feet to a powerful infection that ravaged his body. Given that only about 15 children who die in a given year are potential donors, the team expected a long wait, said Dr. L. Scott Levin, chairman of orthopedic surgery at Penn Medicine and director of the hand transplant program at Children’s Hospital of Philadelphia.
Doctors gave Harvey and his mother a skin color chart — similar to one Brigham surgeons have provided Chelsea — so they could pinpoint which tones were acceptable.
“We lucked out with the first offer we had,’’ Levin said. Four years later, Harvey writes, dresses himself, and recently cut his birthday cake.
Dr. David Klassen said there are longstanding misperceptions that African-Americans donate at lower rates than whites. Blacks last year accounted for 13 percent of the 17,554 organ donations in the United States — about equal to their proportion of the population.
But their need for certain organs is greater, said Klassen, chief medical officer for the United Network for Organ Sharing, a nonprofit that manages the country’s transplant system. Blacks make up 29 percent of Americans on the waiting list for an organ, in part because they are more likely to suffer from high blood pressure and other diseases than can lead to kidney failure.
Still, because there are fewer African Americans in the population, the number of African-American organ donors is relatively small — 36 in New England last year compared to 292 white donors. Black families who are asked also say no to donation slightly more often than white families, a difference Averhart attributes partly to general distrust of the medical system and religious beliefs.
Families must give specific permission to donate a loved one’s face or hands; signing up to be an organ donor with the Registry of Motor Vehicles is not sufficient.
Given what he has gone through the last five years, Chelsea is eager for a donor so he can live more normally.
Chelsea grew up in Los Angeles. Before the accident, he worked as an independent salesman for J.P. Cooke, which manufactures rubber stamps, name badges, and door signs. Deeply faithful, he regularly attended Bible study sessions, went to services at The Living Gospel, a Christian church in the Moreno Valley, and spent time with his daughter Ebony, now 29.
Chelsea doesn’t recall many details of the car accident or the immediate aftermath.
His car overheated on Interstate 605 and he pulled onto the shoulder. Minutes later, a drunk driver in a pickup truck slammed into the back of Chelsea’s Chevrolet Blazer and it caught fire. He jumped out and another driver who had stopped on the freeway helped pat out the flames leaping up from his shoulders, according to a police report.
Police arrested the driver of the pickup truck at the scene for drunken driving.
Chelsea spent six months in a coma and was hospitalized for a year and a half, mostly at the University of California Irvine Medical Center. He endured multiple infections, the amputation of two toes and two fingers, more than 30 surgeries, and brushes with death.
“They didn’t think I would live,’’ Chelsea said. “They called my family in three or four times.’’
Plastic surgeons used skin from other parts of his body and from donated cadaver skin to cover his burned shoulders, arms, and fingers, leaving him with three different skin textures, he said.
But doctors there told him there was nothing more they could do to repair his disfigured face. They could mold lips from skin but he would not be able to move them.
Chelsea must tilt his head back to swallow food and use a syringe to squirt liquids into the back of his throat. His teeth are exposed, putting him at risk for gum disease and tooth loss.
“You have no idea what it’s like to speak to a customer, friend, or a loved one when your lips and tongue have been burned,’’ he wrote on a website his family and friends started to raise money for his medical care. “Despite their best efforts to hide their instinctive reactions, I can feel their discomfort, and there is nothing I can do. My business fell apart because of it, and many of my friends drifted away.’’
He decided not to sue the driver who injured him, because he believed it was unintentional and because the driver did not have much insurance, if any, he said.
Several years ago, a plastic surgeon at a Kaiser Permanente hospital in Fontana, Calif., where Chelsea receives medical care, mentioned that he had trained with a friend of Pomahac’s. The friend connected Chelsea and Pomahac.
The Brigham wanted to register Chelsea for a face transplant in 2015, but encountered delays. The surgery will be paid for by a grant. But the hospital had to negotiate with Kaiser, Chelsea’s insurer, to provide follow-up care, and to cover the cost of the immunosuppression drugs he will need for the rest of his life so his body does not reject the transplanted face.
If all goes well, most patients achieve 60 percent normal function within a year and are able eat and smile, Pomahac said. Doctors are using facial recognition technology to study whether more complex emotions, like anger, are recognizable in face transplant patients.
Chelsea said God has been by his side through his trials and knows he will provide comfort through the next crucial step. “I would like to kiss my daughter’s cheek,’’ he said.