Short Wave - The First African American Face Transplant

Episode Date: December 19, 2019

In 2013, Robert Chelsea was hit by a drunk driver and sustained third-degree burns on more than half of his body. Nearly six years later, he became the first African American recipient of a full face transplant. We talk with Chelsea and Jamie Ducharme, a Time staff writer who followed his journey, about the procedure and how his story could help encourage organ donation by African Americans. Follow Maddie on Twitter @maddie_sofia. And email the show at [e-mail] pcm.adswizz.com for information about our collection and use of personal data for sponsorship and to manage your podcast sponsorship preferences.NPR Privacy Policy

You're listening to Shortwave from NPR. Today on the show, we meet Robert Chelsea, the first African-American to receive a full-face transplant. Hi. This is Maddie. How are you? Yes, I'm doing good. Back in 2013, Robert was hit by a drunk driver while stopped on the side of the road with car trouble. His car caught on fire, and so did he. Third-degree burns covered more than half of his body.

Robert survived, but he was in the hospital for early. a year and a half, and he didn't see what his face looked like for the first eight months. And then they wheeled me to the hallway. While being wheeled, I saw the reflection of my face in an aluminum towel holder. I said to myself, so this is with all the stresses about. I had no clue that I had been that severely going. But I was okay. I mean, I knew I didn't look like, you know, it's kind of a scary kitchen. One little boy, he said, Dad, Dad, he looks like a zombie. But for Robert, other things were more important than the way he looked.

Being able to eat in a somewhat normal fashion, I had to pretty much eat like an alligator, just straight up, took my head straight back. Earlier this year, Robert finally got some of that function back when he received a full-face transplant in July. Less than 50 people have ever received a transplant like this. And Time staff writer Jamie Disharm was there to document his journey. So, Jamie, you've spent a lot of time with Robert a year reporting this story.

If you were to describe him in three words, you know, what would they be? Kind would be the first one, resilient and faithful, I would say. Today on the show, Robert Chelsea's story as the first African American to receive a full face transplant. And time reporter Jamie Descharm explains how his story could encourage more organ donation among African Americans, a community that has experienced a long history of mistreatment by the U.S. medical system. How long was Robert on the transplant waiting list before he got offered the initial face? Oh, very, very quickly. That offer came, I think, about a month after he got on the list, which is pretty unheard of. And then after that, it was a very long wait for a second one.

And my understanding is that he turned down the first face that he was offered. Why was that? So the way it works is they try to find a donor who is as close in complexion match as possible, just because it makes the surgery easier, the cosmetic result is better, and it also helps ease the recovery mentally, I think, just because your identity changes as little as possible. And this donor that they found was much, much lighter in complexion than Robert. They use a 1 to 18 scale to kind of talk about the color of the donors that they're looking at. Robert's about a 15 or a 16, and this donor, I think, was a 1, no darker than a 3. And Robert just decided that that was not going to work for him and that he wasn't quite ready to take on a change that drastic.

You know, one thing that he said that I thought was kind of interesting is that he didn't really feel like he was in a rush. All he wanted was to be able to use his face to eat. normally to close his mouth, to drink through a straw, to kiss his daughter on the cheek. So to him, you know, it was not the kind of thing that he was thinking about all day every day. It was sort of when we find the right one, it will happen, but he was not impatient at all. So eventually Robert did get a face that matched his complexion enough that he accepted it. Tell me a little bit about the actual surgery. So the surgery was insane. It takes about 16 hours, including all of the phases. It was led by an amazing surgeon at Brigham in Women's Hospital. His name is Dr. Bowden

Pomehawk. This was his ninth face transplant, which is incredible to me. He started out by flying to the site where the donor had died, and he and his recovery team started by detaching his face and tissues so that they could be reattached to Roberts. So they put it in his cooler, and then they fly it back to Boston where a team is prepping Robert by starting to detach some of his nerves and vessels. So they start with the neck and make sure that all of that goes smoothly. And then once there are signs that the transplant will be successful, then they remove his old skin and start reattaching all of the vessels and nerves

with extremely painstaking work, like tiny, tiny stitches that they have to do under a microscope. Wow, that's a lot. And, like, scientifically pretty cool. Oh, it's amazing. So Robert was the first African-American to, receive a full face transplant. Tell me a little bit about why that's such a big deal. You know, there's a long history of African Americans being mistreated by the U.S.

medical system going back to, you know, times of slavery when slaves were often recruited to be unwilling participants in medical experiments. And something I really uncovered in my reporting and talking to, you know, people and medical historians and people who study this space is that the legacy of mistreatment through things like, you know, again, experimentation on slaves and the Tuskegee experiment in which U.S. researchers denied black men with syphilis treatment for decades. And, you know, all of these horrible examples have really culminated in a feeling of mistrust in the medical system among black Americans. So they're much more hesitant to do things like organ donation because they don't inherently trust

that a doctor is going to do what they say they're going to do with the organ. The study that you were talking about is kind of infamous, the Tuskegee syphilis experiment. There were apologies and people came out and talked about how unethical it was and how it never should have gone forward in the way that it did. But men died and men passed this on to their partners and to their children. And it's very hard to make that go away. I don't think that you can.

Yeah, you're right. And that study lasted decades. It was a very long study. And it's frankly incredible to me that something like this was going on during Robert at Chelsea's lifetime. I'm going to play you cut a tape for Mopper. He actually talked a little bit about that. There's a very little donorship of our community as a result of the history that's particularly in the African American culture. And the skepticism is very real. It's not just skepticism, but we have a history that just does not allow for us to do that confident.

in the system. And that legacy has unfortunately followed the African-American community for centuries and decades since then. Yeah, I mean, let's talk a little bit about that because I think in your piece it said that only 17% of black patients awaiting an organ transplant got one in 2015 compared with about 30% of white patients, right? So there's a definite disparity there. Correct. So there's a few different factors that contribute to that. One being that rates of disease are just much higher among black Americans.

And part of it which I found fascinating is that black Americans are far less likely to ask their family members and loved ones to donate for them. So having a really visible example like Robert Chelsea could make an enormous impact just on encouraging people to register as organ donors, to see it as a good thing and to sort of literally see the face of what this can do. One eye can save eight people's eyes. One eye. A grown narrow transplant can eliminate accursing a sickle cell disease. And I get a chance to not only learn of this, but advocate now. We're talking humanity. And I would not have ever had this kind of emphasis or interest to this degree

if I had not gone through this experience. So, yes, there is a great deal of responsibility, not on my shoulders, but I feel in my heart. Yeah, that sounds like the Robert that I know. Yeah, and I was, I liked it because I asked him about it, and he was like, well, let me tell you some things. Let me sit down and let me tell you some things about organ donation. And he was just, you know what I mean?

It was just like, boom, boom, boom, these are the things you can do. This is why it's important. And I thought that was pretty awesome. is far from done now that the surgery is done. I think this is something he's going to be working on for years in the future. Right. So let's talk about how Robert's doing now. You've checked in with him a little bit about his recovery. Yeah, I mean, from the very beginning, his doctors were blown away by how well he's doing. He had very, very few complications after the surgery. His face looked great right away. He was up and walking and talking days after the surgery, needed very few pain killers.

His vision was a little off. He had some swelling around his eyes and some extra skin on his eyelids. So he couldn't see all that clearly. And people kept telling him how great his face looked. And he really couldn't see it that well. And that was just really striking to me that people are so impressed by the surgery, but Robert's just trying to see and trying to recover. Since then, he has just done amazingly well. And you can even hear in the tape that you've played for me, his voice is so much clearer. than it was when he was discharged. His recovery has really been remarkable to watch. With God, the grace of God, Maddie, I don't know if you knew this, but I have not had any pain. Oh, wow. You know, you've heard about valley experiences,

mountain talk and valley, but there's the lilies in the valley. How would you like to be able to lay among the lilies in the valley? I like your attitude, Robert. That's beautiful. Well, this is not our attitude, Maddie. It is not a conception, idea, optimistic, positive thinking. He has lilies in the valley.

You've got to get down in the valley in order to experience it. So, Robert, would you say more than anything your faith has helped you through this experience? God carries me. He is a perfect gentleman. All I can do is enjoy the ride. I was smiling the whole time listening to that clip because he has said almost verbatim. all of those things to me. And it's been very, very affirming, I think, to see the response to the story.

I've gotten numerous emails from readers who thanked Robert for sharing his story. And a few have even told me that they've decided to become organ donors since reading it, which is just incredible. And I think a real testament to the story that Robert is telling. A big thanks to both Robert Chelsea and Jamie DeScharm for talking with us today. Today's episode was produced by Britt Hansen and edited by Viet Le. I'm Maddie Safia. Thanks for listening to Shortwave from NPR.