Face Transplantation Donor Issues

Earlier this week Texan Dallas C. Wiens was placed on the face transplant wait list at Brigham and Womans hospital. He will stay in Texas until a suitable face donor can be identified and the donated face will be harvested and placed onto Wiens. Donations for face transplantations are still very rare with only two face transplants yet performed in the United States. Matching for skin tone and gender are unique to facial allotransplantation because not only is the skin itself moved from donor to recipient, but also any facial hair, skin texture, and tone of skin making finding a match an even greater challenge than looking for blood type and genetic compatibility.



What is highly unique and interesting in the case of Dallas Wiens is that he is non-sighted. Sadly, Wiens was blinded during the searing electrical accident that took not only his face, nose, lips, teeth, and cheeks, but also both of his eyes. That he is non-sighted is in fact a highly significant moment the world of face transplantation. Recall that Connie Culp was shot in the face by her husband leaving her incredibly disfigured. While she is legally blind, she still possess enough sight to see forms, identify people, and make her way around familiar settings. All other face transplantations, 11 to date, have involved sighted individuals. Charla Nash who was attacked by a chimpanzee that literally ripped her face apart, including her eyes, was denied a face transplantation even though she lived for over a year at the site of the first facial allograft -- The Cleveland Clinic. One compelling reason to deny a non-sighted individual is that face transplants require, like all donated tissues of genetic mismatch, medications to keep rejection at bay. Face transplant patients are required to look at their faces daily for signs of rejection and if one is blind, then how is that to be accomplished? In fact, might blindness put the individual at higher risk for not catching the initial signs of trouble, or place them in a situation of even increased dependence on others to monitor their condition for them?

Consider the meaning of a face transplant to a non-sighted person, one who obviously cannot see the facial trauma themselves, nor see the stares that sighted and disfigured people find greatly distressing? Might a blind recipient change the overall meaning of the transplant itself as a kind of drape to transform and repair one's visage back to a recognizable form? Or does conducting a face transplant on a blind individual change, or least challenge, our notions about what human faces mean to ourselves and others -- that they are to be looked upon and inspected.

It is entirely possible that this pending face transplantation on a blind patient could be the single most important message about how important the face is to both one's physical but also emotional and psychological self. Wiens has asked for a face, not so that he can see himself in the mirror, or fix the stares of others, but rather, so that he can feel the kisses of his little daughter on his cheeks (his skin now taken from his back and thighs is numb to the touch), to smile, and the ability to smell the rain. The face transplant with Wiens becomes more clearly, more powerfully perhaps than other attempts to study and understand the face such as film, photography or painting as an instrument to conduct one's emotional life. Yet here, unlike the traditional surface takes on the face -- Weins says he wants a face for what it does for him from the inside out. The inner, usually hidden aspects of the face, the underneath part that clings to the muscle and contains the nerves and blood supply becomes the path to experiencing one's self rather than from a mirror gaze of the outer layer.

Thankfully, the doctors at Brigham and Women's, notably face transplant surgeon Bo Pomahac has agreed to work with Dallas Wiens. Pomahac recently related to me that people without a face are at a social disadvantage and suffer social isolation and that to not help them is the greater ethical wrong over asking them to somehow search for tissue rejection. He stated that most of the non-sighted folks who wish for face transplants have well established social connections that can help with monitoring the graft.



Pomahac, and the New England Organ Bank, will find a donor soon, and this donation will be offered with the knowledge that the face is to be given to a blind man. Imagine your first thoughts if this was your loved one who just died, would it matter to you if the recipient could never see, maybe never appreciate the face of your loved one in the way that the donor had used his own -- by looking, staring, and being looked at?



It is also entirely possible that a family may even more readily agree to donate a face if the person who wanted and needed it did not want the face to look at at all, but rather so that they could feel and become alive with a more interior and psychological use of the donated tissue. If potential donors indeed do see this as somehow more compelling than helping one to speak more clearly, or not be socially shunned, then this pending operation will become a landmark in surgical history not only for being another first, but for also extending our meditation on what the face means to us all.

First Face Transplantation -- Isabelle Dinoir

In late November 2005 the first face transplantation was performed on a woman whose mid and lower face had been removed by a pet dog. While she slept Isabelle Dinoir's beloved pet pawed at her face, perhaps in an attempt to wake her from a drug induced slumber. Overcome by a difficult week, Isabelle had taken the drugs to help her to rest. Overdosed and unconscious she lay unaware as her dog scratched and nibbled at her face. In the morning Isabelle woke and tried to light a cigarette. Sensing her mouth to be changed and seeing blood on the floor, she made her way to the mirror and witnessed her facial trauma. Horrified she called her family who arrived and brought her to the hospital in Amiens, France where they reported that her nose, cheeks, lips and portions of her chin were gone, forever gouged off of her face.



Six months later, Isabelle under went a historic face transplant, one that later face recipients would gratefully refer to as ground breaking and the path to their own facial repair. Isabelle's surgeons, most notably Drs. Dubernard and Devauchelle performed the elaborate operation using tissue donated from a women who died from a cerebral hemorrhage (not suicide which is the usually cited cause of death for this donor). Isabelle's consent form is a remarkable and historic document warning her of the dangers of taking a lifetime of immunosupressant drugs to keep the face from rejecting, of how the surgery itself will progress, and even the necessity of using make-up to cover her suture marks. Unique to her consent form is a warning of how her life will change after the surgery by being the first face transplant recipient and provides hints that there may be a high degree of related social interest and media attention -- two side effects that would prove challenging for the dignified and reserved Isabelle. At the end of the consent document, gathered on the day before her surgery, sits Isabelle's signature, her remarkable consent to undergo this innovative procedure to replace her face, the center of her identity and selfhood and begin a new chapter in the history of allotransplantation.

Boston Med -- Bohdan Pomahac

On the final episode of Boston Med surgeon Bohdan Pomahac can be seen conducting the only second face transplantation ever performed in the United States. The series director Terence Wrong films the remarkable surgery and follows Pomahac around Brigham and Women's as a remarkable drama unfolds around them. While Pomahac had prepared for this innovative procedure for many years, it somehow becomes the right moment for a number of firsts to emerge within this historic city already with an amazing array of medical firsts. Within this show alone would occur the first New England face transplantation, the first time a face transplant donor is identified, the first time a donor's wife meets a recipient wearing her husband's face, and the first time two face transplant patients meet -- Isabelle Dinoir and James Maki.

A perfect storm is required and each player in this storm is intriguing and moving. Joseph Helfgot and his family are waiting for a heart to become available and when one does Wrong films the transplant team collecting the organ and bringing it back to the hospital. Like all transplant patients and their families, they are so grateful and feel full of hope. Sadly, Helfgot never wakes from his operation and his family is asked if they would like to donate not only his internal organs, but also his face. Susan Helfgot decides that her husband would want to help continue the tradition of organ donation and agrees for her husband's face to be used to replace another's. James Maki, a Vietnam veteran had gravely injured and lost his nose, lips, cheeks and surrounding bone structure after falling onto the third rail in a Boston subway station approximately 4 years earlier. After 10 operations Maki learned to live without a face, at least without one we could recognize as a face. Taunted by others he lives in isolation with his wife and daughter doing the best they can.

I first met Bo Pomahac after emailing him in the spring of 2008 asking if I could speak with him about face transplantation. I had hoped that I could simply talk with a surgeon who wished to perform the procedure, to learn more about the actual operation, but also just to talk about the topic with someone who understood it and with whom I could engage my thoughts on the subject. Only a handful of research and literature had been published to date and I think at some level I needed to be in the presence of somebody who know a lot about it, believed in it, and found it full of potential. Bo emailed me quickly back saying that it would be fine. In the writing of the book, I began to see some trends in some of these remarkable surgeons, sets of behaviors that would catapult them towards innovation and compassion and one of these traits, I believe, is a sense of openess and generousity.

After Maki's surgery, Dr. Pomahac hands him the mirror to survey his brand new face. Wrong is there to film what might be one of the most captivating scenes ever recorded by film. Just before the mirror is handed to Maki, Pomahac is asked what he thinks might happen. I knew from the medical literature we had discussed that studies had shown that the recipient would not look like their old selves, nor the donor -- that bone structure would play a large role in the way the new face looked. I had however wondered much about this during the writing of our book on the topic. I knew from Sander Gilman's work on identity and the nose, and from the literature on rhinoplasty, that we place a great value and meaning on noses and that a transplanted nose would always be the nose of the donor. I also wondered if the self was an entity that could be captured simply by having a face, maybe any face would complete that gap between the faceless and the faced. As Maki glanced into the mirror he first remarks on his nose, that he indeed has one. He then, after a few seconds of reflection, says that he can see his old self in there. At first the two statements do not seem to blend, he sees this new nose, one that marks the donor (later in the show Susan Helfgot meets Maki and says that she did not see her husband in the face except for his nose) yet he also feels like himself. Bo reflects upon this later and one can sense that he too is moved, that one can replace a face and an entire sense of selfhood in this one amazing act of face transplantation. "What else could one want," he poignantly remarks.

Towards the end of the episode, Bo sits in his house with his children looking at pictures of James Maki explaining how special Jim is as a patient. Yet what I caught was his "World's Greatest Dad" T-Shirt, perhaps a gift from his children that he chose to wear for filming that day. I think that is what makes him stand out, not just because he is now clearly a famed, history making, surgeon who conducted a face transplantation, but because he embodies traits such as the ability to blend sensitivity with celebrity and to balance compassion and conviction with a drive to doing what is right and fair.

Face Transplant #12 -- Surgeon Laurent Lantieri

On June 26th French Sugeon Laurent Lantieri conducted the 12th face transplantation on an anonymous patient with an undisclosed medical condition. As remarkable as all the face transplantations have been to date, this operation broke new ground with the addition of eye lids as part of the facial allograft. The eyes, in a way, have become the fulcrum on which the future of face transplants sit.

The eyes are surgically difficult to navigate for a couple of reasons. First, imagine the challenges for the face transplant patient if the eyelids never become mobile. Typically it can take 6 months to animate the face in a satisfactory manner, e.g. smiling, speaking, etc. Surgeons have been wary of replacing the eye lids not only because it can take up to a year to develop adequate facial movement in the transplanted tissue, but also because if the nerves never generate proper movement, the patient will be left with a significant visual deficit -- not a enviable position. Thus far, as with the case of chimpanzee attack victim Charla Nash, surgeons have not wanted to conduct face transplantations on the severely visually impaired. Nash is an interesting test case in the US. Rejected by the Cleveland Clinic, she has now relocated to Boston and is currently being evaluated by famed surgeon Bohdan Pomahac. What makes Charla's story even more remarkable is that she was not only blinded by the rogue primate, she possess no eyes -- yet she desires a transplanted face.

What is the meaning of a face? Why might a blind woman desire a transplanted face if she will never be able to see it? Face transplantation in many ways raises the everything question: who are we? Here will be explored the meaning of face, losing face and gaining face. How has this innovative procedure that is slowly gaining acceptance in the the surgical world -- watch Boston Med. Thursday nights at 10PM to see the story of face transplant recipient James Maki -- forcing us all to consider what it means to have a facial identity, lose it, and desire the face of another.

In the meanwhile, the most recent face transplant recipient has been reported to cry tears through his transplanted tear ducts . . .