Carmen Blandin Tarleton and her doctors at Brigham and Women’s Hospital knew a face transplant would be especially perilous. Tarleton’s potent immune system was braced to reject a donor face. Burned beyond recognition in a domestic violence attack, Tarleton urged surgeons to push forward.
But last month, six years after her transplant, the risks became painfully apparent when doctors discovered underlying tissue damage that will likely lead to the loss of her donor face. The Brigham is evaluating Tarleton, 51, for a possible second transplant. To her, that would be a far better option than returning to the scarred, misshapen face she was left with after the assault.
She said she was shocked by the setback and is searching for her bearings on what feels like constantly shifting ground.
“Even though this has happened, I have no regrets,” Tarleton, of Manchester, N.H., said in a telephone interview Thursday. “I had such a low quality of life prior to my face transplant. Do I wish it had lasted 10 to 20 years? Of course.’’
More than 44 patients worldwide have received face transplants, including 15 in the United States. The Brigham has done nine, more than any other medical center. No American patients have lost their donor faces.
But last year, a French surgeon performed a second transplant on a man from that country whose immune system rejected his original donor face eight years after his transplant.
Tarleton’s doctors noted that most transplanted organs — including kidneys, lungs, and hearts — have limited life span. But her situation is a reminder that despite successes in the field, face transplantation is experimental and still a young science with many unanswered questions about benefits versus long-term risks.
Some recipients struggle with infections and other side effects of the drugs they must take to suppress their immune systems, or require follow-up operations. And doctors do not know how long face transplants will last.
“There are so many unknowns and so many new things we are discovering,’’ said Dr. Bohdan Pomahac, director of plastic surgery transplantation at the Brigham and one of Tarleton’s surgeons. Still, he said, “it’s really not realistic to hope faces are going to last [the patient’s] lifetime.’’
Dr. Brian Gastman, a transplant surgeon at the Cleveland Clinic, which did the first US face transplant 11 years ago, said more patients are starting to experience chronic rejection. “We all believe every patient will likely need a retransplant” at some point.
Since her transplant in February 2013, Tarleton has had repeated rejection episodes when her new face became swollen and red. Doctors were able to successfully treat those instances, and Tarleton said the transplant dramatically changed her life for the better.
But last month, she alerted her doctors about new painful symptoms. Her face swelled, and by the time she arrived at the hospital, blister-like sores developed along the edges of the transplant on her neck and near her ears.
When Brigham physicians examined samples of her skin and underlying tissue under a microscope, they saw that some blood vessels to her face had narrowed and closed, causing facial tissue to die and turn dark.
Dr. Anil Chandraker, medical director of kidney and pancreas transplantation at the Brigham, said the repeated episodes of injury and recovery probably caused scarring to the vessels. “What we couldn’t treat is what we couldn’t see,’’ he said.
Tarleton and her doctors are waiting to see how fast the damage to her face will spread. If it progresses slowly, over months, and the Brigham approves her for a second transplant, she will eventually go on the wait list for a donor. The worst-case scenario is for the facial tissue to die quickly. Then doctors would have to remove the donor tissue and reconstruct her original face, leaving her once again severely disfigured.
That is the scenario Tarleton fears most.
“We all know we are in unchartered waters,” she said. “I would rather not have to go through a catastrophic failure.’’
Tarleton was injured when her estranged husband forced his way into her Vermont home — where she lived at the time with her two daughters — late one night in 2007, beat her with a baseball bat, and doused her body with a powerful lye. The attack burned over 80 percent of her body and left her legally blind.
Within hours of the assault, Tarleton was flown to the Brigham, where she underwent 38 surgeries over the next three months. Because she received dozens of blood transfusions during her recovery, her immune system went on high alert. Similar to what occurs when people receive vaccines, her antibodies were primed to attack foreign cells and tissue even more aggressively.
But doctors devised a special treatment plan for her, and surgeons transplanted the donor’s facial and neck skin, nose, lips, muscles, arteries, and nerves. The problem doctors feared occurred five days after surgery, when the donor skin swelled.
For more than a month, Pomahac, Chandraker and other Brigham doctors desperately tried drug after drug and a special dialysis-like procedure to stop the reaction. Nothing worked, and Pomahac spoke to his patient about possibly removing the face.
The only other option was a dangerous medication that would nearly shut down Tarleton’s immune system for one to two months, leaving her open to serious infections. She opted to push forward, and the treatment worked.
Now, she is facing another potential crisis.
It will take at least a month to evaluate Tarleton and reach a decision about a second transplant, doctors said.
Chandraker said one positive development is that her immune system is less sensitive than it was six years ago because of the immunosuppression medicines.
Tarleton said the most significant improvement to her life has been pain relief. Before the transplant, she took heavy doses of narcotics to treat the pain from scarring on her neck. And it was difficult to turn her head.
She was able to taper off narcotics in 2014.
She has learned to play the piano and banjo, wrote a memoir, and has spoken to many groups about her life. She lost 20 pounds, began walking 5 miles a week, and moved to Manchester two years ago, where she could independently go to the grocery store and laundromat.
Her daughters are now in their 20s — one lives in Vermont and one in Texas — and she has two grandchildren.
It has been a rough year, though. Aside from the setback with her new face, the synthetic cornea transplanted in her left eye failed, leaving her almost completely blind. She recently completed an application for a guide dog.
“These are not common things to go wrong, but when things go wrong you have to deal with it,’’ she said. “l will get back to where I was. How, I don’t know. I will get through this.’’
Liz Kowalczyk can be reached at firstname.lastname@example.org.