Carmen’s body has started to reject the transplanted face she received in 2013. Now she has a difficult dilemma to deal with.
She's already suffered so much – a savage attack that left her with a onein-10 chance of survival, dozens of surgeries and a full face transplant. Yet despite her ordeal Carmen Blandin Tarleton got her life back – she has a boyfriend, grandchildren and a busy existence filled with music, exercise and inspirational speaking.
But now Carmen (51), from Manchester in the US state of New Hampshire, is trying to beat the odds again as the unthinkable happens: six years after her surgery her immune system is rejecting her new face. And as the facial tissue darkens and dies, she’s confronted with a terrible choice: to have another transplant or undergo reconstruction of her original severely disfigured face.
“We all know we’re in uncharted waters,” she told the Boston Globe newspaper. “I’d rather not have to go through a catastrophic failure.’’ Carmen’s life changed forever in 2007 when her estranged husband broke into her home and viciously beat her with a baseball bat. Then he doused her in industrial-strength lye, a chemical often used in drain cleaners.
She was left with severe burns over more than 85% of her body and she lost her sight. In her memoir, Overcome – Burned, Blinded, Blessed, Carmen recalls how doctors described her assault as “the most horrific injury a human being could suffer”. In 2009 she received a synthetic cornea transplant which partially restored her sight, and in 2013 she became the fifth American to undergo a full face transplant.
She received the face of Vermont woman Cheryl Denelli-Righter who died after suffering a stroke. Since her surgery Carmen has battled repeated rejection episodes when her new face became red and swollen. Those incidents were treated successfully but last month doctors found blood vessels to her face were narrowing and closing, causing the tissue to die.
They’re now waiting to see how fast the damage progresses. If it happens slowly, she could be put on the waiting list for a new donor face. The worst-case scenario is if the tissue dies quickly, in which case surgeons will have to remove it and reconstruct her original face.
To make matters worse the cornea transplanted into her left eye in 2009 failed, leaving her almost blind. She’s applied to get a guide dog. “These aren’t common things to go wrong, but when things go wrong you have to deal with it,” she says. “I’ll get back to where I was. How, I don’t know. I’ll get through this.”
After her attack Carmen endured 38 surgeries in three months and had to have dozens of blood transfusions. When she finally got her new face everyone held their breath, hoping for success after all the horror – but five days after the operation, the outcome doctors feared most occurred when the transplanted tissue began to swell.
For more than a month, medics experimented with various drugs and a dialysis-like procedure (to remove toxins from the blood) to try to save the face. Their efforts were in vain and it got to the point where her surgeon had to warn Carmen of the possibility of removing her new face.
Her doctors came up with a high-risk strategy: shut down her immune system with medication to give her new face a chance to be accepted, despite a serious chance of infection. She went for it and the treatment worked – and with her new face came a new lease of life.
“It’s given me incredible amounts of healing in many ways,” Carmen says. “I’ve done many, many things because I had a face transplant.” She found love again, spent time with her two daughters – both in their twenties – and revelled in being a grandmother of two.
An interview with a local news channel showed pictures of Carmen snuggling up to her boyfriend and bouncing a grandchild on her lap. It also showed footage of her playing a keyboard, which she learnt to master while waiting for her transplant. “Without conscious intention, I also started writing music. In the past four years, I’ve written 13 songs,” she posted on her website.
The most significant improvement
to Carmen’s life was pain relief. Before
the transplant she took heavy doses
of medication to counter the pain
caused by scarring on her neck, which
also made it difficult to turn her head.
But a year after the surgery she was
able to taper off the drugs.
The TV interview shows her walking confidently with a white stick and dark glasses – after the transplant she covered 8km a week and lost 9kg. She also learnt to play the banjo and gave many inspirational talks. But her public speaking has been put on the backburner as she battles her latest health challenge.
“I had such a low quality of life prior to my face transplant. Do I wish it had lasted 10 or 20 years? Of course,” Carmen says. “It’s my wish and my choice to be retransplanted. I won’t only get back to where I was physically and whatnot, but I’ll be in a better place down the road.”
She hasn’t allowed photographs of her “failing” face to be published as it’s too graphic. Carmen’s predicament is a reminder that the field of face transplants is still experimental. The procedure has been performed only 40 times worldwide so there are no long-term studies or risk assessments to guide surgeons.
“There are so many unknowns and so many new things we’re discovering,’’ says plastic surgeon Dr Bohdan Pomahac, one of Carmen’s original surgeons. “It’s not realistic to hope faces are going to last [the patient’s] lifetime.’’ No face transplant patients in America have suffered total rejection, although last year a French man received a second face eight years following his transplant, after his body rejected his donor face.
A sobering reality check comes from Brian Gastman, a transplant surgeon from Ohio who led the first US face transplant in 2008. “We all believe every patient will likely need a retransplant at some point,” he warns. For now Carmen is undergoing evaluation for a second possible transplant.
It’ll take at least a month to reach a decision and a GoFundMe page has been set up to raise funds to help with her considerable medical expenses. But courageous Carmen remains positive. “I’m coping well and I have the support I need. I’m doing the best I can every day,” she says. “I’m really okay with it. Because really, I’m not done. I’m not ready to go. I have lots of things I want to do.”