Gray's Donation

0:00Hey, this is Radiolab. I'm Latif Nasser. And today we have a story for you that gets at the satisfaction of knowing. There are lots of moments in life when you are a piece of someone's story, just a little part of it for a moment, and you never get to see how that story shakes out or what impact you actually had. This story starts out like that. A family puts something out into the void, something very meaningful to them, without any expectation that they will ever hear back about it. But then they decide, actually, wait a second. We do want to know what came out of that. And so they go on a quest to find out.

0:44It's an episode we originally released in 2015, and we've got a little update for you at the end. I should say at the top, this episode discusses medical issues with a pregnancy, if that is a sensitive topic for you. Either way, I think it's one of the most profound episodes we've ever put out at this show. Here it is. Gray's donation. Wait, you're listening. Okay. All right. Okay. All right. You're listening to Radiolab. Radiolab. From WNYC.

1:21Rewind. Hi, this is Jad. Hi. Hey, it's me, Jad. And I'm Robert. And today's story started when we bumped into an article in the Philadelphia Inquirer. Were you a little bit weirded out as to why we were calling you? Yes. I don't, you know, I mean, I just don't understand the whole thing. The story really gets going with a phone call to this woman, Elizabeth Mason. I'm a receptionist slash swishboard operator. She works at a research lab in Boston, and one day she's sitting in her desk, and she gets a call from a woman who says that she has donated some eyes to them, and she wants to know what happened to them.

1:59It's not a call you get every day. I just remember it was just very unusual, right? I didn't know what to do with it. I just felt like I got to find somebody to help this woman. Today we're going to tell you the story of the woman on the other end of that phone call. This is her story. You might tell you their story. So for my title, should I say, I'm Sarah Gray. I'm the mom. I'm Ross Gray. I'm Thomas' dad. And how did you guys meet? We met in a bar in Glasgow. Really? Yeah, I was on vacation with a girlfriend. And was it what happened without getting into too many? I don't know. I think we've got different ideas and different recollection of what happened.

2:39Well, he started dating across the ocean for a year and a half, and then he moved to America. Five days after he arrived, they were married. A few years after that, they were pregnant with twins. And when did you first know that something was up? It was at the 12-week screening. They call it the first trimester screening, and they're checking for birth defects. I think the most common one is Down syndrome. But it was September 30, 2009. They went in for the screening. The ultrasound tech took a scan of the two fetuses, and shortly after, the doc came into the room. and said that only one of the twins would make it and one of the twins had anencephaly and would die within a few minutes or hours of being born.

3:23And he said he could see that because one of the twins had a round skull and the other one had a bumpy skull. The bumpy skull showed him that the skull wasn't correct, wasn't round enough. The brain and skull weren't forming properly, which is what anencephaly is. A bit of a shock, obviously. I couldn't believe that. Yeah, you're just kind of... It's difficult to process it, I think, because you think, no, that can't be right. They've just told us it's identical twins, but one of them's completely different from the other. It sounded fictional to me. Making matters worse. The doctors said that the unhealthy twin was posing a threat to the healthy twin, and if we were to be safe, we would do a selective termination to save the life of the healthy twin.

4:03So Sarah says they were suddenly faced with this choice. I actually docked to two priests on the phone about it. Really? Yeah. Wow. Her family's Catholic. She was raised Catholic. I don't know. I guess I wanted to see what their take was on this. Yeah. This is probably not the direction we want to go to for this radio story. No, I mean, I'm suddenly interested. Basically, what I was saying is, would you come and do a blessing over the selective termination? And what'd they say? One priest said, no. He just said he wouldn't do a blessing over a selective termination. And then the other priest said that because of a Thomas Aquinas rule of like, I think it was called double account or something, basically like the rule that if you if a train is coming and you like you want to save the life of someone on the train tracks and you shoot the driver, that's the right thing to do.

4:52After looking it up, it's actually called the Doctrine of Double Effect. And she's basically right. Maybe not the part about shooting the driver. But the overall idea is that if you're trying to do good and on the way to doing good, you must inadvertently do some harm. It's okay in certain circumstances as long as your intentions are good. Anyway, the priest said because you're doing this with the intent of saving the healthy twin, that he would be there and he would do a blessing. Fast forward a few weeks. We'd booked a hotel and we'd packed our bags. And the night before was really terrible for both of us because, I don't know, we had seen him on the screen and we sort of were attached to this little kid.

5:33Next day they go in for the procedure. We go into the room and the doctor puts the sonogram on me and we start getting ready and he said, your placenta has moved since the last time you were here. And the location where it is right now, I don't think we should do this he said if I nick it if I even just nick it a little bit like you're going to bleed uncontrollably and this is not safe to do he said that he wouldn't do it on his wife either what was that like to be on the table relief was it relief really? yeah it was a relief oh my god we got in the elevator we just hugged and we're like oh I think the decision's taken out of your hands it's not our fault but then your healthy twin is more at risk maybe Yes.

6:20It was like a nail-biter for the rest of the six months. And according to Ross, those six months were deeply strange. Just buying one of everything when you know there's two babies coming. And we knew we were going to be having a funeral as well. So I called the funeral director and told him, we're going to be having a funeral. And I'm like, well, when was the death? I'm like, well, I don't know. The guy's not even born yet. That's very weird. All right, so they get to the day of March? 23rd. 23rd, okay. 2010. 10.30 a.m. Thomas came out first, and he's the sick one that had anencephaly. And then a minute later, Callum came out.

6:58And I wasn't sure if Thomas was going to be born alive. I sort of expected him to die within a few minutes, but... He was struggling at first when he came out. They didn't think he was going to last too long, but then he kind of... He rallied. He rallied, and he was doing pretty good. Oddly, it was then Callum, the healthy twin, who started to have some trouble at the beginning. And so he and Sarah went off to the infant ICU. And so Ross says, in the delivery room. It was just me and Thomas for quite a while, actually. We were just sitting together. What was that like, Ross? It was, you know, it was cute, you know.

7:33It was like a brand-new baby, you know. They cry, but he was, like, grabbing onto my finger and, I don't know, doing the kind of things that babies do, you know. There's nothing you can do but just kind of give them a cuddle, you know, and try and stop him crying and cheer him up. And I remember coming to the recovery room and Ross had this little bundle in his arms. And I said, who's that? And he said, Thomas. And I said, he's alive? And I'm like, oh, let me hold him. And so I held him and yeah, he was cute. Like he breastfed and we could feed him with the bottle. They ended up taking him home?

8:05I hadn't really planned on that. Like we didn't have another car seat. We just didn't think of that. And I remember thinking like, what if he's going to beat the odds? Like, do we need to arrange daycare? and like, you know, we hadn't thought of that. He seems all right. You know, he could hang in here for a while, you know. But then soon after, Thomas started having seizures, started having trouble breathing, stopped eating. And at the time, I remember thinking, you know, like, come on, little guy, like, just eat some more. Like, if you eat some more, then you'll be stronger. I was like, just eat, just eat.

8:38Well, so how long did Thomas live in the end? Six days. Six days. He died in Ross's arms and he was surrounded by all of the people that loved him.

8:51And then right then we called the Washington Regional Transplant Community. They sent a van over to our house and they picked up his body and took him to D.C. Children's National Medical Center. Okay, so this is where the story really gets going, I guess. So how did that idea of donating his organs come into your head? Did you see an article in the newspaper article or something? Yeah, my mom saw an article about a baby who had anencephaly who donated liver cells. And most major religions support organ donation. Oh, okay. So the van came, picked up Thomas. What happened next? Nothing happened.

9:33Nothing happened. After that, for a long time. You know, I think we got a letter in the mail, I guess. It was sort of a form letter. basically said, thank you for your generous donation. Thomas' corneas have been sent to this place in Boston where they study potential cure for blindness. And his livers have been sent to this place in Durham, North Carolina, where they study ways to treat liver disease. It seemed generic to me because I thought, I want to know who ordered it, which researcher got it, and what study are they working on. But, you know, they went on with their lives because they had this new baby, Callum, to raise.

10:06So they put it behind them for the most part. But then Sarah says they got to the one-year anniversary. The one-year anniversary felt like a big moment to me. Like that's when I can, that's when it stops being in the present and it can start being in the past. You know, just explaining it to people, at least I can say it was a year ago, so they don't have to feel stressed out when they talk to me. And it felt like a big deal. Like I think we were going to go to the cemetery and put some flowers on his grave. And I wanted to tell my family what were the results of his donation. So she called the donor family services person at the place that picked up Thomas's body, and she basically asked them.

10:42Like, is there any more information you can give us about the specific study or the researcher if something was published? And they didn't have any. So I just thought, okay, well, I tried, you know. But she couldn't quite let it go. What do you mean she couldn't quite let it go? You know, it was curiosity. But I also think she was having, on some level, like a big conversation with the universe. I think they both were. Like, this terrible thing happened. How do you explain it to yourself? I don't know. I mean, I think, honestly, it sort of shook my faith in God and how the universe works. I thought that karma worked, or if I was basically a good person and I obeyed the rules, good things would happen to me.

11:23Whatever the reason, these thoughts about Thomas and where he ended up, they were just there. She had no real opportunity to act on it, so they would just kind of come in and out of her mind. But then around the two-year anniversary, so this is now a year later. I had a business trip to Boston, and I was exhibiting at a conference at Heinz Convention Center. And I Googled it, and I saw that Skypen's Eye Research Institute was just a few miles away. That's where Thomas's corneas had been sent. Ah, lunch break. That's exactly what I did. I called Skypen's, and I said, you know, I donated my son's eyes to this lab a couple years ago, and I'm here in town.

12:01Is there any chance I can come by for a tour for like 10 minutes? That must have been a weird phone call. Yes. I mean, yes. Yeah, that was like a waker upper. That's Elizabeth Mason again. It was just very unusual. I think she was surprised. I didn't know what to do with it. Had you ever gotten a call like that before? Never have gotten a call. And she's been working there for 25 years. She said, hold on, let me connect you to the right person. Don't hang up. A lot of times when I say something, they hang up on me. So I said, please hold the line why I started searching for someone to speak with her.

12:32It's going to take me a while because I've got to figure out who that is, but don't hang up. And they connected me with someone in donor relations, but it was financial donor relations. Oh, like the development department. Yeah. Not an organ donor. Because they don't have any other donor relations. That was the person that gives the tours and deals with the public, so she got to talk to me. Sarah says the woman was a little bit flustered, but super nice, and said, you know, we've never done this before, but yeah, come on down. We'll give you a tour. I was so excited. I took pictures of the outside of the building, and I stood in the lobby, and I put one of the brochures in my purse, and I just felt like I can't believe I'm here.

13:16This is like being in Santa's workshop or something. I didn't think this was a place you could actually visit. She was taken around, and eventually she got taken to the lab where Thomas's corneas went. And there were refrigerators with signs that said, no food. And then she introduced me to this guy called Dr. James Zisky, who's a professor of ophthalmology at Harvard Med School. And he was eating his lunch at his desk, and she explained who I was. And he said, you know, thank you for the donation, and do you have any questions for me? Of course she did. I wanted to know how valuable the eyes were, like if they get thousands and thousands, or if they get one or two, or like when the delivery came, was everyone excited or was it no big deal?

13:59Like was it sitting on a shelf collecting dust or were people doing stuff with it? He put down his lunch. And he said most of the eyes that we get are from people who are older just because most people are older when they die. And infants' eyes are worth their weight in gold. Wow. I was like, I could barely speak. I was like, could you tell me why? He said because they regenerate, they have regenerative properties. and he said, if you don't mind me asking, how long ago did your son die? And I said, about two years ago. And he said, well, we're likely still using your son's cells right now because that's how long they last.

14:36Wow. I know. So at that point, Sarah was like, okay, since that worked out so well, why not just keep going with it and visit all of the places where bits and pieces of Thomas ended up? So, you know, chase down his liver, his retina, his cord blood. How many doctors might that be? Do you have any idea? Well, there's the Boston one. There's two in North Carolina. She would ultimately discover one in Richmond, Virginia, one in Philly. Wait a second. What if it turns out that these people, you know, didn't find anything? You know, research is research. You don't always have a hit. That's true. She's not heading for validation necessarily here.

15:15She might find it. She might get further lost. Well, yeah. But she's going to go? She's going to go, and she's not going to stop. Cross your fingers. It's coming up.

15:31Hey, I'm Jad Abumrad. I'm Robert Krillwich. This is Radio R. Where are we at this point? Okay, yeah, so Sarah Gray, when we left her, she was standing in a research office in Boston and feeling good. Yeah. She's gotten this rose of a success. And so after that, her and Ross get in a car and head down south. To Durham, North Carolina. To track down Thomas's liver and a bit of his blood. Cord blood. Because it turns out that in the delivery room, right after both twins were born, nurses had withdrawn a little bit of cord blood from both twins, sent it off to Duke, where researchers were studying the disease that killed Thomas, anencephaly.

16:04Mm-hmm. She says they walked in. We met the study coordinator, this guy who worked on the Human Genome Project, a grad student. They met all these different researchers who all seemed really excited about her twins' blood samples. I think it was just weird that one of them had anencephaly and one of them didn't, and they were genetically identical. So it's a good control study for them to compare. After they all took the tour, one of the researchers even told them that they had compared Thomas' blood to Callum's. And they found there were a thousand differences in epigenetics between both twins.

16:37They're called epigenetic differences. I think their genes are the same, but the things that control the genes were different. That's so interesting. So they began identical, but then somehow in utero, a thousand little changes crept up between them. Yes. Yeah. It's possible that a few of those changes might one day explain the disease. In fact, I even asked the grad student who worked on it most closely, Deirdre Krupp, I said, were you surprised by what you saw? And she said, for me to be surprised, that implies that I knew what to expect. She said, we're just at the beginning of this trying to learn about this.

17:11So that's two roses Like this is amazing Yeah, visit two sort of kicked butt She's on a roll here So after visit two, they got in the car Drove down the street to this place called Cytonet Which is where Thomas' liver ended up Basically Cytonet will take a solid liver And they liquefy it And then they inject the liquid liver into a baby That's waiting on a liver transplant As a bridge therapy Liquid liver? Liver and a tube They went in, again got a tour Refrigerators, petri dishes. The whole thing. The researchers then tell her that they had a little issue with Thomas' liver. His liver was bruised when they got it, so they couldn't inject it into a baby.

17:49But then they told her that they were able to use it in an experiment. To determine what was the best temperature to freeze infant liver cells, which is negative 150 degrees Celsius, as you already know. Common knowledge. Okay, half a rose there. Half a rose, yeah. And she says at one point as they were being walked around the place. We walked through the break room and someone had taken a picture of Thomas that we had handed out. And they took the photograph and they taped it up in the break room with a little sign that they wrote on it saying Thomas Gray was a donor here March 29th, 2010. And I was so excited to see that because I thought they're just as curious about us as we are about them.

18:28Like I was wondering who what kind of person goes to work and opens up a box with the liver in it. and they're probably wondering what kind of person takes their loved one's liver and puts it in a box and mails it over here. So my name is Arupa Ganguly. I'm a professor in the Department of Genetics at University of Pennsylvania School of Medicine. Now, Arupa Ganguly, just to switch to her for a second, she studies a kind of cancer of the eye called retinal blastoma, which happens almost exclusively in children. And at this point, she doesn't know Sarah. She has no concept of this whole search that's happening.

19:02She is just studying eyes. Where are we, by the way? Philly. Philly, Philadelphia. Now, she studies tumors, but she also needs healthy retinas in order to do her work. Now, you can imagine that getting a normal retina is not a very easy task, because why would you get a normal retina from a baby? I must tell you that if and when an eyeball comes, it is not a pleasant experience, right? Because for a moment, you have to think the origin, the sources of this eyeball. And it's sad. In every possible setting, it's sad. Sad and frustrating, she says. Because only when a normal child dies, that's when I can get this retina.

19:49So it's a horrible setup in my mind. So she says often when the retinas arrive, which happens maybe once a year, and you pull them out of their packaging. You right away, you feel like. Like maybe you're trading on other people's misery. And I mean, it's so bad when a child dies, but I am asking for his or her retina. Yeah. In a way, I had this sense of guilt in my head. Now, Aruba had never spoken to a parent of any of her samples. So when she got that email, and she was sitting on her computer, and she read the email from the company that provided her the sample saying, the mother of this sample wants to get in contact with you.

20:35I paused. I stopped. And doing what I was doing, and I thought,

20:44why does the mother want to talk to me? That was my first question.

20:53So I did not reply right away. But after my conversation with the lab, I took, I think, one day to compose a letter, and I sent it back to Sarah Gray. And they ended up eventually talking on the phone. I told her, I think, at the very onset that, Sarah, you have to understand that I feel awful. She said she felt kind of guilty because she wished for this sample. Like almost by wishing for it, she had made it happen. She said, Arupa, you should not feel bad about it. If you didn't use my son's retina, I would have buried it in the ground. Like, you're the only one that wanted it. Bad things happen to children.

21:34And so by being able to help you with your work. We added a layer to Thomas's life. That was, uh, I was amazed. Eventually, Sarah and Ross visited Arupa's lab. She gave them a tour, and she showed them Thomas' retina. She still has samples of it in her freezer. Tiny little, I don't know. Tiny little vials, maybe a third the size of your pinky, filled with frozen liquid. Liquefied retina. RNA. It didn't look like much, but it was amazing to think of how many people were involved getting these samples there. Like we had to approve it. We had to fill out this paperwork. Then the doctor had to come and remove the eyes and the eyes had to be processed and the eyes have to be shipped up there.

22:22Then they have to do whatever DNA process they do and just how, I don't know, valuable, maybe even priceless the sample is. Sarah says that throughout the whole process, you know, of losing a child and then seeing him reclaimed bit by bit by all of these different people. Something shifted in me.

22:47I used to think, like, the universe treated people the way it should, and now I don't really believe that. But I do believe that there are really amazing, kind people in the world. And science and medicine has something to do with that. I started feeling that these were Thomas's colleagues and his co-workers and that he was a valuable partner in this important research that was being done. And I felt an even more fundamental shift, almost like I had felt like I was a boat on an ocean that was like rocky and choppy with waves. And I had this feeling that I'm not the boat, I'm the ocean. Like the decisions that I make are changing other people as opposed to just I'm a boat getting slapped with waves all the time.

23:44It has made me feel