The ‘guinea pigs’ who had face transplant surgery

0:00This is The Guardian.

0:08Today, the painful truth behind face transplant surgery.

0:20Just as a heads up before we start, today's episode does contain graphic details of surgery which some listeners might find distressing.

0:33In 2019, Robert Chelsea made medical history. A terrible car accident on a freeway in Los Angeles had left him with horrific burns. Actually, it was worse than that. His whole face was burnt off. He spent 18 months in hospital and had multiple operations, but still couldn't lead anything like a normal life. The way I was eating for about six years is through syringe. The idea of not being able to kiss your own daughter's cheeks, that's tough, you know? Going out in public became an ordeal. A little boy, I guess he was about three or four years old, he looked at me and he froze. And he ran straight to his daddy.

1:25I said, Daddy, Daddy, he looks like a zombie. Doctors had reached their limits. All the other specialists, they felt they couldn't do anything to help give me lips, except make a flap that would cover my lips and protect my teeth and gums. Then he was offered something that sounded like a miracle When I got the call, it was like 9.15 at night and I had to get there the next morning from Los Angeles to Boston, about 3 ,000 miles A full face transplant A donor's face would be fused onto his in a 16-hour operation He became the first black patient and one of just 50 people across the world to have this groundbreaking procedure.

2:20But it's come at an enormous cost. I'm the first. So a lot of these symptoms, nobody knows about.

2:36From The Guardian, I'm Annie Kelly. Today I'm Focus. 20 years after the first face transplant. Are they a medical miracle? or an ethical nightmare.

2:51Robert, you're talking to us from your home in California. Can you just tell us about your operation? As a full face transplant, they had to strip my face altogether. See my hair? Oh, wow, okay. So all of this... Wow. So that's the full head from the back of your skull all the way down to underneath your chin? They had to sew the blood vessels, the nerve endings, the tendons, muscles. So that's a lot different than a transplant that's internal. The donor's face was actually larger than mine. This forehead might react a different way. My cheeks will react differently. The chin, the nose, the lips, they all react differently.

3:43All right, so because the donor's face that you got was actually bigger than your own face, and there's so many different components, it's really complicated. And of course, you look completely different. I didn't have hair before. I'd been bald since I was maybe 40 years old or whatever, and now I've got all this hair. So many people don't recognize me because I have another face. All right, so you used to be bald, and now suddenly you've got all of this hair. It's very difficult for my daughter. I look in the mirror as least as I can, maybe once a day, because I'm dealing with a possible rejection right now.

4:28So I have to look in and put this very special cream on my face to help with the rejection, along with some other medications. And the medications that you're on, could you just tell me what it is that you need to take to make sure that the transplant keeps working for you? This morning I'm taking about 60 to 18 pills in the morning. Wow. And about 5 in the afternoon and about 8 to 10 at night, every day. And is that medication covered by insurance? Well, it just became on the item. I'm still covered for some and not for others. My shared cost for last year was$5 ,600 a month. I can't just have it mailed to me.

5:20I have to physically go and pick it up. My car I was leasing, it was repossessed twice. Oh, all right. So your car was repossessed twice because you couldn't afford the car payments. But I imagine, obviously, you need your car to go and collect your medication. Are you also having to travel often to the hospital? Yeah. If I call 911, it's going to cost me$500. In 2022, I was in hospital 107 times. Wow. 2024, it was 94 times. Right. So I know you've got a GoFundMe page. are you able to afford all of this treatment and the hospital visits? The answer is no. What can you do? You have to go. And that is very difficult.

6:08Even if I could afford it, the medication is not what I've anticipated. And what advice would you give somebody else who would be about to go through this operation, this face transplant that you've been through? What advice would you give them knowing what you know now? Your advice is, number one, get a claim with your Heavenly Father. And it would be foolish not to. I would suggest that they get a new, good, clean, healthy, strong set of knee pads and use them. Knee pads because you'll be praying a lot. My advice, we're not walking through challenges like God can.

7:06Fae Bound Alberti, it's so great to welcome you to Today in Focus. You've got a really fascinating career. You're a professor of modern history at King's College London and head of the Centre for Technology and the Body. And you've also just written a really fascinating article about face transplants for The Guardian, based on research you've done for a book and a documentary that's coming out in 2026. So can you tell us, how did you get interested in this? Yeah, absolutely. So I've been a historian of emotion, medicine and the body for the last 25 years. I recently discovered that I have prosopagnosia, which is face blindness, which is when you don't necessarily recognize individual people, which gave me an added emotional twist.

7:51And I've always been interested in facial expression and how that connects to emotion. And when I saw some images and videos of face transplant recipients, I was surprised and unnerved because the emotional communication is different to when people have their natural faces. So I started researching the history, especially because as a historian of medicine, I also have studied facial reconstruction since World War I. And can you just give us a brief history of face transplants? When did they start and why? So people were talking about face transplants in the 1990s, especially the US military, as a way of helping veterans who've had terrible facial injuries.

8:34In about 2000, there was a team in the UK who wanted to do the first ever face transplant in the world. It was all really exciting. And then everybody was busy trying to get the ethical permissions to do it because it was a first. And then in secret, virtually overnight, France did the first face transplant on a woman called Isabel Dinoir. And when was this? 2005, 27th of November, 2005, so 20 years ago and Isabel a few months earlier had been attacked by her pet dog while she was unconscious after taking sleeping tablets. Later it was said that she tried to kill herself and Isabel was taken to the nearest hospital.

9:17She wasn't offered facial reconstruction which would be the norm. Instead she was taken to the Amiens University Hospital where she had the face transplant and after the transplant she was brought out before the world's media

9:48and people got very excited about what was possible gradually darker bits of the story came out at the same time as signing the consent form. She agreed to be part of a documentary. She agreed to sell her photos. This is before the operation? Yes. And she wasn't offered traditional reconstruction. And you see, from an ethical point of view, none of that is what we would consider best practice. Once the first face transplant had been done in 2005, people thought, oh, great, this is a viable solution. Let's do it. And all of those ethical concerns that people worried about in the first place just fell away.

10:25It unleashed a kind of, I call it a face race, where many teams want to join in. And then ever more complex and ever more boundary pushing operations took place. So the second actually was done in China. We're going to take his old face off and put a new one on.

10:48Rapidly followed by 2008 in the US. And then a full face transplant in 2011, and 2020 was the first double hand and face transplant.

11:09So Joe, you know what we're doing today? We're going to kind of liberate you so we can let you look in the mirror. Give me a big smile. See how everything's starting to move? Isn't that great? Open your mouth real wide. 2023 was the first eye and face transplant. So ever more pushing the envelope, really, in terms of what is possible. And these operations, they were so pioneering. And the patients who had them were all over the media. But can we go back a little bit? Can you tell me about what it actually means to have a face transplant? Like what's the actual procedure and how does it differ from facial reconstruction?

11:47So most facial reconstruction takes bits of skin and tissue from the person's body, usually the thigh, and repairs injuries. And the UK excelled in that from First World War onwards. Reconstruction is advanced, but there are still areas where, for example, the skin around the lips, skin around the eyes is not possible to reconstruct in the same way as it would be through a face transplant. With face transplant, what you're doing is you are finding a match. So the person has to have the same blood group, same tissue compatibility, same rough age, same gender, same ethnicity, and they have to be a dead donor.

12:29You have to get the permission from their family. And in terms of the extent, with Isabelle Dinoy, it was the triangle. So it's the triangle kind of nose down to the mouth and the chin. Yes. More recently, there's been face transplants that involve the whole of the scalp as well, and even the eye. The operation can take up to 36 hours, where you have donor face being removed in a parallel operation usually to the recipient face being prepared, so all of the existing tissue being removed. And then the surgeons have to attach the donor face to the recipient face, and they have to attach as much as they can the arteries, the blood vessels and the nerves.

13:11And this is an incredible skill of microsurgery. So it's only the moment when there is a blood supply to the tissue and the body accepts the graft, that the face is accepted, then the journey starts. So these surgeries offer patients real hope, don't they, of regaining something more like a normal life. We spoke to Robert, who you know very well, and he spoke to us about how his new face allows him to eat again and kiss his daughter. But these operations are huge. What are some of the potential medical complications that come with them? I suppose the biggest issue is rejection. So your body can reject the face.

13:53Most people experience at least one rejection a year. The risk of rejection gets higher over time. Your face is said to age several times faster than your own face would have done. You can be very likely to get infection. You can succumb to a range of physical problems because you're taking heavy-duty immunosuppressants and steroids all the time. So that ranges from kidney failure, cardiac failure, cancers. So you can't live a normal life by any means. I mean, unimaginable, really. Yeah, absolutely unimaginable. And it's still such a risky procedure, isn't it, with these very unsure outcomes? Patients are generally told it will last 10 years.

14:37And you're told 10 years based purely on the fact that that comes out of solid organ transplants. Some will live longer, some won't live so long. And so of the 50 face transplants around the world, 10 of those recipients have died. That's quite a big percentage, isn't it? Yeah. It's one fifth. Yeah. For an elective procedure, it's a high mortality rate. With someone like Isabel, who it seems to me was very vulnerable and she had a history of depression, Her family spoke out to me because they wanted people to know that it was very hard for Isabel to be held up as an example. They told me that she didn't have the support she wanted, but more to the point, she never had a normal life again.

15:19She didn't get a job. She felt depressed. Her family told me that she attempted suicide several times after her operation. And she felt in the end, her family tell me, quite abandoned. I know you spoke a lot to Isabel's family when you were researching The Guardian article. but you also know other patients who've gone through face transplants as well. You know Robert very well. But could you tell us about Dallas? Yeah, absolutely. Dallas was blinded and he also lost his face when he was painting the side of a church and his head made contact with an overhead electricity wire. He was a young guy.

15:57He wanted his daughter not to be embarrassed of him, which is why he agreed to have a face transplant. Heartbreaking. Yeah. Yeah. Dallas lived with Anna Lynn, his wife, who was also blind. And they did struggle because they both had trauma. They both lived in a state of absolute poverty and couldn't afford even to get his medical appointments sometimes. I mean, it sounds like he really struggled with the aftermath of that. Yeah, he struggled because in the US you don't get financial support for everything. I mean, he lived on disability, but in terms of the procedure, because it was funded by a grant, But the grant didn't cover long-term psychological support or the cost of medications and getting to your appointments.

16:41And so that daily grind for Dallas was very difficult, especially when his kidneys failed. And he died during the course of the documentary that I was making. He ended up in dialysis and he had just got on the waiting list for a kidney when he died. Do you think patients are aware that they're going into this kind of life after they have the transplant? It's a good question because what happens is that when people have a face transplant normally, they've been through multiple reconstructions and then they are offered an opportunity to have a new face which restores functionality. The patients that I have talked to are not generally prepared for what this means.

17:22It isn't that the surgeons don't tell them because they do tell them. But as Dallas said to me, it's a very different thing to be told it than to experience it when your kidneys fail. And the healthcare system in the US where Robert lives, where people are reliant on health insurance packages or Medicaid grants, it doesn't seem like it would be the best system to give long term or sustainable support to face transplant patients. I think that if you go through something profound that means that you lose a face and you don't get the long-term psychological support, that's a real problem. And what happens often in systems with commercialised medicine, they don't get long-term care because they only get what the grant covers.

18:09If a grant doesn't cover psychological counselling and evaluation, what happens five years down the line when you've been through multiple rejections and you're no longer speaking to the family that was supposed to be there to look after you and you can't work again because your whole body is unwell because of the medication you're on? I mean, those are the kind of long-term issues that have to be considered. coming up should we even be doing face transplants anymore

18:48do you think we should ever do a face transplant here in the uk i think ironically the uk is somewhere where it would be comparatively safe compared to some of the things i've seen in commercial healthcare because it would care about the whole patient. In Leeds actually they have an NHS funded hand transplant programme and I think that they have an exemplary psychological protocol where it takes two years of waiting people really understand what's happening and we don't actually have the clinical need in the UK to do the face transplants is the argument because we don't have ballistic injuries we don't have the same kinds of injuries that they have in the US.

19:27Okay, so that's interesting. So gunshot wounds basically. Yeah, I don't think that there will be a face transplant in the UK because I don't think the surgeons will want to do it now. When I started doing this work, one of the things I was quite surprised by is that there is no essential or mandatory recording of what happens. So you mean recording of the patient's experience after the operation? Yes, and it's quite surprising, isn't it? It's But unlike solid ordering and transplants, what doesn't happen is that there isn't an up-to-date, fully accurate accounting for every face transplant that's happened around the world or what's happened to the people.

20:09And it's only really in the last couple of years that people have started thinking, well, this is a bit of a problem, we need to know. And the reason for that is simple. When you have experimental treatments and there's so much on the line, people's career, the reputation of the clinics and so on, it's really hard to say that something's gone wrong. And not everybody wants to admit it, let alone, you know, publish about it. And so part of the issue is about what is success? How do we, if we're counting entirely on whether a graph stays on a person's face, well, to me, that's not success. That's a surgical measure of success, but that's not a human measure of success.

20:45We need to know from the patients how they feel about it. But do you think we'll keep on doing them? What I've said to the surgeons is we're at this critical moment where we've been doing this for 20 years. It could go the way of lobotomies. We might look back and think, why did we think that was a good idea? It could go the way of vaginal meshes and end up being, you know, embroiled in scandal. Or it could be the way of IVF. And IVF ended up being a legitimate path because surgeons made sure that the standards were high and that, you know, everybody understood what was happening with data. So it's down to them really to prove it a success.

21:24I also think that the field of the future is more exciting because until we can get to grips with immunosuppressants, until we can improve immunosuppressants, I think the risks are too high. But there are exciting things happening with biomedical scaffolding, with tissue regeneration. There are alternatives and I think that's what the future is going to be. So after all the work you've done, the patients that you've met and some of the stories that you've heard, people struggling to pay the bills after they've had these operations, struggling to understand their own kind of medical condition and how it is that they need to help themselves get through that kind of afterlife of the operation.

22:05Do you think that we should still be going down this path if patient aftercare isn't more properly considered? No, I think it's completely unacceptable to expose patients to this level of risk, to make somebody a lifelong patient, unless you're prepared to look after them. And one of the challenges in the history of innovation is that we don't care enough or spend enough time thinking about the people that are innovated on. And it makes me think Robert's words and, you know, in the past, he's talked about himself as a guinea pig. and Dallas's wife, Anna Lynn, described him as a guinea pig. And she said to me that she was scared that the hospital or the Department of Defence would take his body.

22:47And she was calling me after he'd died, after Dallas had died, and said, I'm scared to tell people because they might take his body. They didn't want his body, but it's a measure of how much she felt that he'd been experimented on, that she said that. and what strikes me is that with the first wave of facial reconstruction in the first world war and with the second in world war ii there was much more awareness on the part of patients that they were guinea pigs in so much so that they called themselves you know the guinea pig club and in east grinstead which proudly branded itself as the town that did not stare people with visible difference and facial reconstruction were treated very differently.

23:30And patients knew that they were in a contract with the surgeons, that they were part and parcel of this voyage of discovery, and they were treated like equals. They got care, they got attention, they got consideration. And I feel that has to be it. We have to be able to think about the whole person and about a person's dignity if we're asking them to undergo these procedures. We don't start and end with our faces. We have, you know, beings and lives that extend far beyond that. And you can't plot it on a chart, but it's every bit a success measure. Thank you so much. This has been such a fascinating conversation.

24:06Thank you. I really enjoyed it. That was Faye Bound-Alberti. My thanks to her for talking to us. And many thanks also to Robert Chelsea. You can read Faye's article, Face Transplants Promised Hope, Patients Were Put Through the Unthinkable, on theguardian.com. And that's all for today. This episode was presented by me, Annie Kelly, and produced by Ivor Manley and Ruth Abrahams. The sound designer was Ross Burns, and the executive producer was Hamma Khalili. Don't miss today in Focus Latest, which is dropping later this afternoon.

24:46This is The Guardian.