What was it like to see your changed appearance after you were attacked in 2007?
Doctors put me in a coma to operate on me after the attack. When I woke up, I was completely blind for the first two years, so I didn鈥檛 really know what I looked like. It wasn鈥檛 until October 2008, the beginning of the court case, that I realised I looked significantly bad: the TV news coverage came with a graphic content warning. For a year and a half I didn鈥檛 feel good about the way I looked 鈥� I made little kids cry. Eventually I had to accept it. But when I did regain enough eyesight to see myself in the mirror, it was difficult. I couldn鈥檛 see who I was before. Even my eye colour had changed. I couldn鈥檛 see me in there. It was disturbing.
How did you feel when your doctor, at the Brigham and Women鈥檚 Hospital in Boston, suggested a face transplant?
I was surprised. I didn鈥檛 know he was doing them. After he first suggested it, I looked online at the pictures of people he had already performed face transplants on. I was shocked 鈥� it was just such a transformation. I wanted that transformation for myself. It seemed a little sci-fi, but he told me it would also be a real opportunity to regain some function in my face. That was what I was most concerned with. For example, I have synthetic corneas in my eyes that were bearing the brunt of not having eyelids, which meant I couldn鈥檛 blink.
Did you have to wait long for a suitable donor?
Yes. Because I鈥檇 had so much surgery and blood from other people during the many procedures, it was difficult to find a tissue match. By the time I was on the list for a face transplant, I had already had 58 surgeries. They couldn鈥檛 find me a donor until 14 months later, and even then we were not a complete match. As a result, I take high doses of immunosuppressive medications that stop my body from rejecting the face.
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How did you prepare for the face transplant?
When you agree to the transplant, psychologists and psychiatrists evaluate you, but they don鈥檛 really tell you anything. A social worker was always on hand to answer any questions I had. I was a registered nurse for 20 years, and I took care of kidney and liver transplant recipients, so I was well versed in the medications.
How did you feel just before the surgery?
That was one of the most surreal moments of my life. It was emotional, but at the same time it wasn鈥檛. It was glorious because I knew things were going to change for the better, but it was also heartbreaking that someone had died. It was as if time had stopped while this big event was happening.
What happened during the surgery itself?
I don鈥檛 know much about it. The doctors took pictures and scans beforehand to find out what wasn鈥檛 working and what I was missing from my scarred face. The left side of my face didn鈥檛 work well. I could barely move it. I didn鈥檛 have eyelids, so I couldn鈥檛 blink. I couldn鈥檛 breathe out of my nose. I didn鈥檛 have lips. They made a map of everything I would need from a donor. It was a huge undertaking. The surgery lasted about 17 hours.
What was it like to wake up with a new face?
I couldn鈥檛 see my face at first because it was swollen, and I couldn鈥檛 see out of my eye. It was probably a good 10 days before I looked in the mirror. During that time, I wasn鈥檛 afraid or worried, given how disfigured I had been before. It was a big relief to look in the mirror that first time. I looked good.
How has your recovery been?
My recovery was quite long. But by the end of the first year, I could see improvements. I could start to close my mouth and smile a bit. I could open my left eye just enough, and blink it a little bit, which was all I really needed. I can eat without drooling and now I have lips. I can breathe out of my nose for the first time since I was injured. Those kinds of things mean a lot. When I woke up after the transplant I couldn鈥檛 feel my face at all. Now I鈥檝e gained about 65 per cent sensitivity in my face. A lot has changed in the two years since I had my surgery.
Your appearance has changed dramatically. Do you still feel like you?
I now have a whole different face that doesn鈥檛 look anywhere near the way I used to look. I now see a pleasing image in the mirror 鈥� I鈥檓 not all scarred, and I appreciate that 鈥� but I still don鈥檛 see me. After seeing my old reflection for 40 years it is going to take a while to look in the mirror and not think, 鈥淗ey, this doesn鈥檛 really look like me鈥�. I鈥檝e sort of gotten used to it. It鈥檚 not stressful 鈥� being disfigured was a lot more stressful.
What are your treatments like now?
There is always surgery for me because my body is 80 per cent burned. Even if I鈥檓 not going to have surgery on my face for a while, I always need scar releases. I have huge scars, and they are so tight that they keep my arms and legs from moving. I need surgery to cut them from time to time, and cover them with skin grafts. Those kinds of surgeries are much more painful than the face transplant. I also have biopsies taken from my face every six months. Doctors look at the tissue and can tell whether or not the face is being rejected.
Have there been any signs of rejection?
All face transplants have shown signs of rejection at one time or another. I鈥檝e had three episodes. They usually happen in the winter months. Sometimes I put a steroid cream on my face, and sometimes my medication is increased. It usually takes about six weeks for the biopsies to return to normal. It鈥檚 nothing to get upset about.
Will your ability to feel and use your face continue to improve with time?
Yes. I鈥檝e recently had a little setback 鈥� a nerve or muscle is not working correctly on the left side of my mouth, which has started to droop. It happened after I gave a talk to teenagers, and then posed for about 300 photos, so I might have overused it. Things like that set me back, but I think it鈥檚 looking better as time goes on.
When you have setbacks like this, should you rest your face, or perhaps exercise it?
My doctors aren鈥檛 really sure because this is all so new. There are no guidelines to follow, so we play it by ear. In this case, my speech therapist is going to give me a call. I鈥檒l do the exercises she tells me to do to see if I can recover from this setback, which I think I can.
Three months after you received your face transplant, you met Marinda Righter, the face donor鈥檚 daughter. What was that like?
It was great. It was her decision to meet me. We鈥檝e had a really good relationship since. She was the person that gave permission for her mother鈥檚 face to be donated. Her mother was a registered organ donor, but given the newness of the procedure the doctors asked for special permission to take her face, and Marinda agreed to that. The faces of most people who have face transplants change significantly over the years. I don鈥檛 know why, but my face hasn鈥檛 changed much, so Marinda still sees her mother in me.
Do you think the experience has changed you in other ways?
It has. I wasn鈥檛 happy being disfigured, but I also knew that I didn鈥檛 have to let it stand in my way. I felt like I needed to shine my light within so brightly that my looks on the outside wouldn鈥檛 be so bothersome. I give a lot of talks. My partner has taught me to play the banjo, so we play banjo together at the end of my talks. I have a great life.
Most people will struggle to imagine coming to terms with such a dramatic change in their appearance.
The only thing I can say is that it really makes you realise that there鈥檚 a part of you that has nothing to do with what you look like. That part of you has nothing to do with the person you see in the mirror.
Face transplants backgrounder
Face transplants involve removing significant amounts of damaged facial tissue and replacing it with healthy tissue from a donor. The exact number is unknown, but between 30 and 35 face transplants are thought to have been performed around the world, since Isabelle Dinoire received the world鈥檚 first partial face transplant in France in 2005.
Different surgical teams use different procedures, but Bohdan Pomaha膲, who performed Carmen Blandin Tarleton鈥檚 transplant at the Brigham and Women鈥檚 Hospital in Boston, uses a conservative technique that minimises the amount of tissue to be grafted. He tries to avoid making a complete swap.
Pomaha膲鈥檚 team first examines the patient鈥檚 face, before removing only those parts that are damaged beyond repair. They then cover the removed areas with fat, muscle and skin from a carefully selected donor. Nerves and blood vessels are painstakingly reconnected under a microscope.
Once the surgery is complete, face-transplant recipients have a lifetime of follow-up treatments. There is always a chance that a person鈥檚 immune system will attack the foreign tissue, called rejection. A fully rejected face might 鈥渏ust slough off and die in pieces鈥�, says Pomaha膲, or it could scar over and stop working.
Long-term prospects
Pomaha膲 hasn鈥檛 yet seen any complete rejections, but recipients tend to have small episodes about once a year, which can be controlled with immunosuppressant drugs.
He hopes all the face transplants will last for life, but he can鈥檛 be sure. People who receive liver and kidney transplants can sometimes develop chronic rejection against these organs over the years, he says. 鈥淥nly half of transplanted kidneys are still functioning 10 years later, which is a sobering thought.鈥�
All seven of Pomaha膲鈥檚 face-transplant recipients are doing well, and their ability to feel their new faces seems to be improving with time. Their ability to control facial muscles has also got better with time and use, although these improvements seem to plateau about three years after the operation.
Pomaha膲 says he is looking to perform the procedure for more people, but any candidates will have to pass a screening process before they can be considered. His team will only perform the surgery for people whose disfigurement can鈥檛 be addressed with established, less-invasive surgery. They have also turned down people who are not medically well enough to undergo the procedure, and those that are unable to fully understand the risks involved.
Profile
, a nurse from Vermont, was left with 80 per cent burns after she was attacked and doused with industrial-strength alkali by her estranged husband. Two years ago, she became one of the first people in the world to receive a full face transplant
This article appeared in print under the headline 鈥淟ooking out from behind someone else鈥檚 face鈥�
