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TERRY GROSS, host:

This is FRESH AIR. I'm Terry Gross. More than any other part of our body, the face defines our identity. It expresses emotion and has the gateways to taste, sight, smell and hearing. I guess that's why the idea of a facial transplant still seems so shocking.

In late 2008, my guest, Dr. Maria Siemionow, led the team at Cleveland Clinic that performed the first near-total face transplant in the U.S. The patient was Connie Culp. Her husband had shot her in the face with a shotgun.

The transplant was performed four years after the hospital's institutional review board announced that it considered a face transplant to be both ethical and possible.

Dr. Siemionow grew up in Poland and first came to the U.S. for a fellowship in hand surgery at the Institute for Hand and Microsurgery in Louisville, Kentucky. She's now Cleveland Clinic's director of plastic surgery research and the head of microsurgery training. She's written a new memoir called "Face to Face."

Dr. Siemionow, welcome to FRESH AIR. Let's talk about some of the reasons a facial transplant is so complicated, and let's start with one of the reasons why you have to do a facial transplant in the first place, as opposed to just taking skin grafts from the person's body. I was amazed reading your book that there's so much facial tissue that you wouldn't have enough skin to graft on your body. Just give us a sense of the amount of tissue that's involved in a facial transplant.

Dr. MARIA SIEMIONOW (Author, "Face to Face: My Quest to Perform the First Full Face Transplant"): Yes. When you want to cover a face with one perfect sheath of the skin, you really do not have enough of skin in your body which is pliable, which has the same texture, the same color and also has a vascular supply, meaning that it's really having a normal life, like tissue in your other parts of the body.

And for this reason, quite often you can see that the patients who are victims of the burn and trauma injuries have a kind of a patchwork of skin of different colors on their face, because some of the grafts taken from your own body are taken from different parts of the body. So you can have a piece of the skin taken from the thigh. You can have a piece of the skin taken from your back or from your buttocks. So as an effect, it gives an artificial, not natural, look on the face.

GROSS: Now in the book, you talk about the complexity of motion that's allowed by the muscles and tissues of the face. Can you just give us a very brief tour of the face so that we can follow along on our own faces as we listen? And that'll also give us a sense of how complex a procedure a facial transplant is.

Dr. SIEMIONOW: Well, if you go from the front of your face, starting with the forehead, and then like you are washing, actually, your face every morning, you can feel exactly that you go through the surfaces which are totally plain, like a forehead. Then you go to your eyelids, which are a little hollow, where your eyes are covered. Then you go over nose, which is again raised and has its own prominence.

Then you go down to your lips, which have a very different type of prominence and different texture, and then you go down to your chin, which is again, a little more prominent and standing out.

Then imagine the patients who are now missing at least one component, such as nose. So when they wash their face in the morning, they are just not only going through the hollow of their ears or the hollow of their eyes, but then they have a hollow where we all have a prominence, such as nose, and that's what is probably very disturbing on daily basis because quite often for some of the patients who do not have nose, they even cannot take a shower in the morning because the water will not allow them to take a shower. It would go down to the throat.

GROSS: One of the things you have to do in a face transplant is remove the face from the body of the donor. So what are you removing when you remove their face? Obviously the skin, but what else besides the skin are you taking?

Dr. SIEMIONOW: This will very much depend on the patient who is the recipient of the transplant, and this will vary from patient to patient, depending on what kind of trauma they have which caused them to be disfigured and have this functional disability.

In the situation of our patient, we were removing not only the coverage, which is the facial skin, but also the three-dimensional functional units, including bones, the bones of the nose, the lower eyelids, the upper bones of the upper jaw, also sinuses, hard palate, as well as upper lip.

So as you can imagine, it is a very, very complex, 80 percent of face of the donor was removed in order to cover the very deep defect of our patient.

GROSS: So, was the donor's face removed in one piece, or did you have, like, several different sections and pieces?

Dr. SIEMIONOW: No, that was in one piece, and we have prepared as a team to this type of live transplantation by a series of what we call mock transplantations in anatomy lab, where as a team, we're meeting on weekends, and we were mimicking the transplant which we would perform on our patient. And this was based on a three-dimensional CT scan of our patient's defect. So we knew exactly what we are doing.

As a team of eight surgeons, we were working almost the same as on the day of surgery, a real transplant. We were working in anatomy on two operating tables and were just creating the defect on one potential patient and then transferring the transplant from another anatomy lab cadaver.

So this was a very long preparation to the surgery. So we haven't done it just without thinking about every detail, anatomical detail - what kind of arteries, what kind of veins, what kind of nerves we need, also about complexity of the bones and to be sure, as you rightly ask, that they have to be taken in one piece which is intact.

GROSS: So I'd like you to describe the face of the facial transplant recipient, who was a victim of a gunshot wound. She was shot in the face by her husband. So what was her face by the time you were doing the face transplant? And I should back up and say, I think you or another team of surgeons had performed several facial reconstruction - reconstructive surgeries, but it still wasn't sufficient to give her a real face.

Dr. SIEMIONOW: Yes, she was missing major functions - of possibility of breathing through the nose, because she did not have a nose. She was lacking an upper lip, and she was also missing lower eyelids, and most of her skin was either scarred or damaged on about 80 percent of her face.

So what we have to replace was the entire nose, with nasal passages, sinuses, also upper lip, lower eyelids and the hard palate, which was missing.

GROSS: And since she only had a hole where her nose was, she was breathing through a surgically created hole in her trachea.

Dr. SIEMIONOW: Yes, she wore a tracheotomy tube. So she was breathing through the tube.

GROSS: So did you have to find a donor whose facial proportions kind of matched the recipient's facial proportions so that the eyelids would fall in the right place, and the nose would fall proportionately in the right place?

Dr. SIEMIONOW: This really - if would be looking into the matching, could be difficult. We were really lucky that the donor was really matching our patient's features. So that was light complexion of the skin, similar width and length of the skeleton, as well as the fact of course that she was a female because that's very important that the donor can be matched for the gender and for the complexion of the skin and for the race.

So this was the first donor which signed - donor family signed consent for the donation of the face, and really amazingly, I must say, we were so lucky that we couldn't believe that the difference in the color of our patient's, for example, forehead, and her own chin, which was left, was exactly matching the color of the donor.

So even today, it's very difficult, except that there is a little bit of scar tissue, which is not very visible, to recognize which color is coming from the donor, which part of the face is hers.

GROSS: Well, the transplant surgery took over 20 hours. One of the things you had to do was take the blood vessels from the donor's face and attach them to blood vessels in the recipient's body. You're working in this world of microsurgery. Would you give us some sense of what it takes to attach the small blood vessels of one face to another?

Dr. SIEMIONOW: Well, if you think about, for example, the fact that artery under magnification of the microscope has a hollow appearance, which is a little flat because of the fact that there's no blood flowing through it when you do that, and it's white. It's kind of without appearance of blood in it.

So it looks really like spaghetti which got flattened out, and then you are just connecting this spaghetti from one end to another end, and you are trying to reconstruct the hollow structure and three-dimensional structure of this artery, and once you are done, and you are actually using very small sutures. The needle is small, the thread is very small, and if you compare them, for example, the thread is about 40 microns in diameter, which reminds the size of the human hair.

So you can imagine that you are putting the stitches with something as thin as a human hair, under magnification of 20 times, and you are just looking through the loupes, and you are concentrated on what you do, and after, for example, 40, 50 minutes of reconstructing this spaghetti to the hollow element, which at some point becomes pink when you take the clamps off, and you see that the blood is going through this new reconstructed artery, and it's actually not leaking, and it's starting to pulsate, and you almost hear in your ears, boom, boom, boom, boom, and you know it's working.

GROSS: In order to get a facial transplant, you have to take immune-suppressive drugs for the rest of your life unless something better comes along, but otherwise your body will reject this transplant. So what are the long-term effects of taking immune-suppressive drugs, I mean, in addition to leaving you vulnerable to a lot of disease? Do they shorten your life? Are they likely to wipe years off your life?

Dr. SIEMIONOW: Potentially. The difference between the transplant patients of the solid organs and our patient of what is known as composite grafts, and faces an example of composite graft, is the fact that these are usually healthy patients.

So to start with, they do not have, like renal failure for the kidney transplant patients, which are usually very sick patients. But the side effects are the same, and that's a very important question, Terry, because we have presented to our patient all the risks and benefits, and we have outlined what may happen.

We have presented the risk of developing diabetes, of potential kidney failure in years to come, but we are hoping with a healthy patient to start, with our protocol of minimal immuno-suppression, trying to wean off patient from immuno-suppression, we at least will be able to help her to go through many years without major side effects. But these are really significant factors to consider when you present to the patient the risk and benefits of face transplantation.

GROSS: My guest is Dr. Maria Siemionow. In late 2008, she led the team that performed the first near-total face transplant in the U.S. She's the director of plastic surgery research and head of the microsurgical training unit at the Cleveland Clinic's Department of Plastic Surgery. She's written a new book called "Face to Face: My Quest to Perform the First Full Face Transplant." We'll take a short break here, and then we'll talk some more. This is FRESH AIR.

(Soundbite of music)

GROSS: My guest is Dr. Maria Siemionow, and she led the team that performed the first face transplant in the United States. This was in December of 2008, and she's at the Cleveland Clinic where she's the director of plastic surgery research.

How was Connie Culp chosen to be the first recipient in America of a facial transplant?

Dr. SIEMIONOW: Well, she was fulfilling many of the requirements as per our institutional review board, IRB protocol, which the first one was that from the very beginning, were considering as potential candidates only patients who have exhausted all potential convention means of reconstruction.

The second was that the patient has to be psychologically stable, and she was evaluated and was found to be in good spirits and very eager to go through the procedure.

The third was also ethical evaluation, that the patient was evaluated by our ethics experts to understand that she would be a first patient, and it bears a lot of ethical issues as well as the fact that she is a research patient, and understanding what does it mean that she's a research subject - meaning that we cannot tell her exactly will be the outcome because not many patients like that were done worldwide, that she would be, in a way, example for others to follow up how her face transplant over time will be doing, how she will be doing as a patient, how she will be integrated into society.

The next important part was to find out the social and family support, who will be supporting her - not only before transplant but also after transplant, and all these things were prerequisites of considering her as a potential candidate.

GROSS: How is Connie Culp now? She was the first recipient of a facial transplant. You led the team that performed the surgery. So what does her face look like now?

Dr. SIEMIONOW: Well, her face looks like a normal human face, which is very important. You know, she has a beautiful nose, actually. She has a little, maybe too much, on the sides of her skin, and that was taken purposely, and we will remove the part on the side of just only her skin, which was used also for biopsies to monitor her rejection.

But really, if you think and you see her on the street, and you don't know her just from the media and recognize her as a face transplant patient, then she's now going back to her grocery stores in her community. She was walking her dog. She's exercising. She's just back to her normal life.

GROSS: And does she look anything like the donor looked? Is Connie's face similar to her donor's face?

Dr. SIEMIONOW: No it's not, and this is a good question because quite often, the question was posed, you know, how much of the donor look, and how much of the recipient look will the face transplant patient have, and since we are adjusting the bones, and we are adjusting the width and depth to her own skeleton, she still has her own face reconstructed.

And I would say of course you can, on the computer models, when colleagues and ourselves were evaluating the potential of how the recipient will look like a donor and vice versa. And also in anatomy lab we were just doing kind of mock cadaver studies, looking at the different sizes of skeletons, we found that most of the simulated transplants look as kind of a mixture between themselves and the donor.

GROSS: How often do you see Connie Culp now?

Dr. SIEMIONOW: Well, we are at this point seeing her even on a weekly basis right now. And as long as she will be doing fine - in the beginning, we are a little more careful in evaluating her more often, but we are for the first year thinking about just having a monthly schedule.

So if everything goes well, and there are no signs of kind of a rejection or suspicion, which we have not so far seen, once-a-month visit for not only myself but team members, as well as psychology, psychiatry, social worker and having her blood drawn and looking at all possible needed during the follow-up visits of, for example, functional re-education, physical therapy. So that will be a checklist of things which we want to be sure we are pretty closely monitoring.

GROSS: I wonder if you see faces differently than you used to now that you've done a face transplant.

(Soundbite of laughter)

Dr. SIEMIONOW: Probably I do, and you know, sometimes I look at all these beauty shows, you know, and shows where they are showing like a total makeover - not that I look at them every day - but this is something which I always wonder if people are not really exaggerating with changes of quite often beautiful faces, even what is now like more beautiful because you need a little bigger lips, or you need a little, you know, more narrow nose or something like that - I think we should be happy with what we are if we have just normal-looking human faces.

GROSS: Dr. Siemionow, thank you so much for talking with us.

Dr. SIEMIONOW: Well thank you. It was a great pleasure. Thank you for invitation.

GROSS: Dr. Maria Siemionow has written a new memoir called "Face to Face." She's Cleveland Clinic's director of plastic surgery research and the head of microsurgery training. I am Terry Gross, and this is FRESH AIR.

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