Gray's Donation

Before he was even born, Sarah and Ross Gray knew that their son Thomas wouldn’t live long. But as they let go of him, they made a decision that reverberated through a world that they never bothered to think about. Years later, after a couple of awkward phone calls, they go on a quest and manage to meet the people and places for whom Thomas’ short life was an altogether different kind of gift. We originally made this story back in 2015, but we wanted to play it again because we love that it brings a view of science that is redemptive, tender, and unexpected. Since we first released this episode, Sarah Gray wrote a book called A Life Everlasting (https://zpr.io/GVYisRaqe9d6), it’s a memoir about Thomas that dives into the world of organ donation and medical science. She’s also written a beautiful short story about shame called The Lacemaker Fairy Tale (https://zpr.io/Li5BMtfHmf92). And, right now she’s working on a script for a movie called Raincheck. EPISODE CREDITS:Reported by - Jad Abumradwith help from - Latif NasserLATERAL CUTS - The Cathedral (https://radiolab.org/podcast/cathedral) The Immortal Life of Henrietta Lacks (https://radiolab.org/podcast/the-immortal-life-of-henrietta-lacks) Signup for our newsletter!! It includes short essays, recommendations, and details about other ways to interact with the show. Sign up (https://radiolab.org/newsletter)! Radiolab is supported by listeners like you. Support Radiolab by becoming a member of The Lab (https://members.radiolab.org/) today. Follow our show on Instagram, Twitter and Facebook @radiolab, and share your thoughts with us by emailing [email protected]. Leadership support for Radiolab’s science programming is provided by the Simons Foundation and the John Templeton Foundation. Foundational support for Radiolab was provided by the Alfred P. Sloan Foundation.

• 0:01Speaker 00

  Hey, 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.

• 0:44Speaker 00

  It'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.

• 1:06Speaker 01

  Wait, you're listening.

• 1:13Speaker 02

  You're listening to Radiolab.

• 1:15Speaker 01

  Radiolab.

• 1:16Speaker 02

  From?

• 1:17Speaker 01

  WNYC.

• 1:25Speaker 00

  Hi, this is Jed. Hi.

• 1:27Speaker 03

  Hey, it's me, Jed.

• 1:28Speaker 04

  And I'm Robert.

• 1:29Speaker 03

  And today's story started when we bumped into an article in the Philadelphia Inquirer.

• 1:34Speaker 00

  Were you a little bit weirded out as to why we are calling you?

• 1:37Speaker 04

  Yes. I don't, you know, I mean, I just don't understand the whole thing.

• 1:41Speaker 03

  The story really gets going with a phone call to this woman, Elizabeth Mason.

• 1:45Speaker 04

  I'm a receptionist slash swishboard operator.

• 1:48Speaker 03

  She works at a research lab in Boston. And one day, she's sitting at 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.

• 1:59Speaker 01

  That's not a call you get every day.

• 2:01Speaker 04

  I just remember it was just very unusual, right? I just, I didn't know what to do with it. I just felt like I gotta find somebody to help this woman.

• 2:09Speaker 03

  Today, we're gonna tell you the story of the woman on the other end of that phone call. This is her story. You might say their story.

• 2:15Speaker 05

  So for my title, should I say, um, I'm Sarah Gray. I'm the mom.

• 2:19Speaker 06

  I'm Ross Gray. I'm Thomas's dad.

• 2:21Speaker 03

  And how did you guys meet? While we're.

• 2:23Speaker 06

  We met in a bar in Glasgow.

• 2:25Speaker 03

  Really?

• 2:26Speaker 05

  Yeah, I was on vacation with a girlfriend.

• 2:27Speaker 03

  And was it, was it, was it, what, what, what happened? Without getting us too many.

• 2:34Speaker 06

  I don't know. I think we've got different ideas and different recollection of what happened, but.

• 2:40Speaker 05

  Well, he started dating across the ocean for a year and a half. And then he moved to America.

• 2:46Speaker 03

  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?

• 2:54Speaker 05

  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's syndrome. But it was September 30th, 2009.

• 3:06Speaker 03

  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.

• 3:12Speaker 05

  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. And 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.

• 3:33Speaker 03

  The brain and skull weren't forming properly, which is what anencephaly is.

• 3:37Speaker 06

  Bit of a shock, obviously.

• 3:40Speaker 05

  I couldn't believe it.

• 3:41Speaker 06

  Yeah, you're just kinda, it's difficult to process it, I think. 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.

• 3:49Speaker 05

  It sounded fictional to me.

• 3:51Speaker 03

  Making matters worse.

• 3:52Speaker 05

  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.

• 4:03Speaker 03

  So Sarah says they were suddenly faced with this choice.

• 4:06Speaker 05

  I actually talked to two priests on the phone about it.

• 4:09Speaker 03

  Really?

• 4:09Speaker 05

  Yeah.

• 4:10Speaker 03

  Her family's Catholic. She was raised Catholic.

• 4:12Speaker 05

  I don't know. I guess I wanted to see what their take was on this.

• 4:16Speaker 03

  Yeah.

• 4:16Speaker 05

  This is probably not the direction we want to go to for this radio story, but.

• 4:20Speaker 03

  No, I mean, I'm suddenly interested.

• 4:21Speaker 05

  Basically, what I was saying is, would you come and do a blessing over the selective termination?

• 4:25Speaker 03

  And what'd they say?

• 4:26Speaker 05

  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.

• 4:53Speaker 03

  After 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.

• 5:14Speaker 05

  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.

• 5:21Speaker 03

  Fest forward a few weeks.

• 5:22Speaker 05

  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.

• 5:33Speaker 03

  Next day, they go in for the procedure.

• 5:34Speaker 05

  We go into the room and the doctor puts the sonogram on me and 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 gonna bleed uncontrollably and this is not safe to do.

• 6:01Speaker 06

  He said that he wouldn't do it on his wife either.

• 6:04Speaker 03

  What was that like to be on the, on the table? You've gone to the

• 6:07Speaker 05

  Relief.

• 6:08Speaker 03

  Was it relief, really?

• 6:09Speaker 06

  Yeah, it was a relief.

• 6:10Speaker 05

  Oh my God, we like got in the elevator, we just hugged, we were like, ah.

• 6:14Speaker 06

  And the decision's taken out of your hands, you know, so it's

• 6:16Speaker 05

  It's not our fault.

• 6:17Speaker 03

  But then your healthy twin is more at risk, maybe?

• 6:19Speaker 05

  Yes.

• 6:20Speaker 06

  Yeah.

• 6:20Speaker 05

  It was like a nail biter for the rest of the six months.

• 6:23Speaker 03

  And according to Ross, those six months were deeply strange.

• 6:26Speaker 06

  Just buying one of everything when you know there's two babies coming. And we knew we were gonna be having a funeral as well. So, you know, I, I called the, um, what should we call it, the funeral director and told them, you know, we're gonna be having a funeral. And like, well, when was the death? Like, well, I don't know, the guy's not even born yet, you know, but I know.

• 6:46Speaker 03

  All right. So they get to the day of March

• 6:49Speaker 05

  Twenty third.

• 6:49Speaker 03

  Twenty third, okay. Two thousand and ten.

• 6:51Speaker 06

  Ten thirty AM.

• 6:52Speaker 05

  Thomas came out first and he's the sick one that had an encephaly. And then a minute later, Callum came out. And I wasn't sure if Thomas was gonna be born alive. I sort of expected him to die within a few minutes, but.

• 7:04Speaker 06

  He was, he was struggling at first when he came out. They didn't think he was gonna last too long, but then he kinda

• 7:09Speaker 05

  He rallied.

• 7:10Speaker 06

  He rallied and he was doing pretty good and then.

• 7:12Speaker 03

  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.

• 7:22Speaker 06

  It was just me and Thomas for quite a while, actually. We were just sitting together.

• 7:27Speaker 03

  What was that like, Ross?

• 7:29Speaker 06

  It was, it was, you know, he was, he was cute, you know, he's it was like a brand new baby, you know, they, 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 kinda give him a cuddle, you know, and try and, try and stop him crying and cheer him up.

• 7:48Speaker 05

  I, 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.

• 8:04Speaker 03

  They ended up taking him home?

• 8:05Speaker 05

  I hadn't really planned on that. Like, we didn't have another car seat.

• 8:09Speaker 05

  We just didn't think of that. And I remember thinking, like, what if he's gonna beat the odds? Like, do we need to arrange daycare? And like, you know, we hadn't thought of that.

• 8:18Speaker 06

  It seems all right. You know, he could hang in here for a while, you know?

• 8:21Speaker 03

  But then soon after, Thomas started having seizures, started having trouble breathing, stopped eating.

• 8:27Speaker 05

  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.

• 8:38Speaker 03

  Well, so how, how, how long did Thomas live in the end?

• 8:43Speaker 06

  Six days.

• 8:44Speaker 03

  Six days.

• 8:44Speaker 05

  He died in Ross's arms and he was surrounded by all of the people that loved him.

• 8:52Speaker 05

  And 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 DC Children's National Medical Center.

• 9:08Speaker 03

  Okay, so this is where the story really gets going, I guess. So

• 9:10Speaker 05

  Yeah.

• 9:11Speaker 03

  How did that idea of donating his organs get, come into your head?

• 9:15Speaker 06

  Did you see an article in the paper, a newspaper article or something?

• 9:19Speaker 05

  Yeah, my mom saw an article about a baby who had anencephaly, who donated liver cells. And most major religions support organ donation.

• 9:27Speaker 03

  Oh, okay. So the van came, picked up Thomas. What happened next?

• 9:32Speaker 06

  Nothing happened.

• 9:33Speaker 03

  Nothing happened.

• 9:34Speaker 06

  For a long, for a long time, you know, you, I think

• 9:36Speaker 05

  We got some letters.

• 9:37Speaker 06

  We got a letter in the mail, I guess.

• 9:38Speaker 03

  It was sort of a form letter. It basically said, thank you for your generous donation. Thomas's corneas have been sent to this place in Boston, where they study a 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.

• 9:55Speaker 05

  It seemed generic to me because I thought, I want to know, like, like, who ordered it? Which researcher got it? And what study are they working on?

• 10:02Speaker 03

  But, you know, they went on with their lives because they had this new baby Callum to raise. So they put it behind them for the most part. But then Sarah says they got to the one year anniversary.

• 10:11Speaker 05

  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 gonna 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.

• 10:36Speaker 03

  So she called the donor family services person at the place that picked up Thomas's body, and she basically asked them.

• 10:42Speaker 05

  Like, 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?

• 10:53Speaker 03

  But she couldn't quite let it go.

• 10:55Speaker 05

  Me, what do you mean she couldn't quite let it go?

• 10:57Speaker 03

  You know, 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?

• 11:10Speaker 06

  I don't know.

• 11:10Speaker 05

  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.

• 11:23Speaker 03

  Whatever 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.

• 11:36Speaker 05

  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 Skypens Eye Research Institute was just a few miles away.

• 11:46Speaker 03

  That's where Thomas's corneas had been sent. Ah, lunch break.

• 11:51Speaker 05

  That's exactly what I did. I called Skypens, and I said, you know, I donated my son's eyes to this lab a couple of years ago, and I'm here in town. Is there any chance I can come by for a tour for like 10 minutes?

• 12:05Speaker 03

  That must have been a weird phone call.

• 12:07Speaker 05

  Yes, I mean, yes.

• 12:08Speaker 04

  Yeah, that was like a waker upper.

• 12:10Speaker 03

  That's Elizabeth Mason again.

• 12:12Speaker 04

  It was just very unusual.

• 12:13Speaker 05

  I think she was surprised.

• 12:14Speaker 04

  I didn't know what to do with it.

• 12:16Speaker 03

  Had you ever gotten a call like that before?

• 12:18Speaker 04

  Never have gotten a call.

• 12:19Speaker 03

  And she's been working there for 25 years.

• 12:21Speaker 05

  She said, hold on, let me connect you to the right person. Don't hang up.

• 12:24Speaker 04

  A lot of times when I say something, they hang up on me. So I said, please hold the line while I started searching for someone to speak with her.

• 12:31Speaker 05

  It's gonna take me a while, because I gotta 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.

• 12:40Speaker 03

  Oh, like, like the development department?

• 12:44Speaker 05

  Yeah.

• 12:45Speaker 06

  Not, not an organ donor.

• 12:47Speaker 05

  But they, because they don't have any other donor relations that, you know, like that was the person that gives the tours and deals with the public. So that she got to talk to me and she was.

• 12:56Speaker 03

  Sarah says the woman was a little bit flustered, but super nice and said, we know, we've never done this before, but yeah, come on down. We'll give you a tour.

• 13:05Speaker 05

  I was so excited. I took pictures of the outside of the building and I felt, 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. This is like being in Santa's workshop or something like, I didn't think this was a place you could actually visit.

• 13:21Speaker 03

  She was taken around and eventually she got taken to the lab where Thomas's corneas went.

• 13:27Speaker 05

  And there were refrigerators with signs that said, no food. And then she introduced me to this guy called Dr. James Ziski, 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?

• 13:48Speaker 03

  Of course she did.

• 13:49Speaker 05

  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? Like, was it sitting on a shelf collecting dust? Or were people doing stuff with it?

• 14:03Speaker 03

  He put down his lunch.

• 14:04Speaker 05

  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.

• 14:13Speaker 03

  Wow.

• 14:14Speaker 05

  I was like, could barely speak. I was like, um, 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.

• 14:36Speaker 03

  Wow.

• 14:37Speaker 05

  I know.

• 14:38Speaker 03

  So at that point, Sarah was like, okay, since that worked out so well, why not just go, 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?

• 14:55Speaker 01

  Do you have any idea?

• 14:56Speaker 03

  Well, there's the Boston one, there's two in North Carolina. She would ultimately discover one in Richmond, Virginia, one in Philly.

• 15:03Speaker 01

  But wait a second, what if, 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.

• 15:12Speaker 03

  That's true.

• 15:13Speaker 01

  She's not heading for validation necessarily here, she might find, she might get further lost.

• 15:19Speaker 03

  Well, yeah.

• 15:20Speaker 01

  But she's gonna go?

• 15:21Speaker 03

  She's gonna go, and she's not gonna stop. Cross your fingers, it's coming up.

• 15:30Speaker 02

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• 15:57Speaker 03

  Hey, I'm Jad, I'm Rod.

• 15:59Speaker 01

  I'm Robert Krulwich.

• 16:00Speaker 03

  Uh, this is Radiolab.

• 16:01Speaker 01

  Where are we at this point?

• 16:02Speaker 03

  Okay, yeah, so Sarah Gray, when we left her, she was standing in a research office in Boston and feeling good.

• 16:07Speaker 01

  Yeah.

• 16:07Speaker 03

  She's gotten this rose of a success. And so after that, her and Ross get in a car and head down south.

• 16:12Speaker 05

  To Durham, North Carolina.

• 16:13Speaker 03

  To track down Thomas's liver and a bit of his blood.

• 16:16Speaker 05

  Cord blood.

• 16:17Speaker 03

  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.

• 16:30Speaker 05

  Mm-hmm.

• 16:31Speaker 03

  She says they walked in.

• 16:32Speaker 05

  We met the study coordinator, this guy who worked on the Human Genome Project, a grad student.

• 16:38Speaker 03

  They met all these different researchers who all seemed really excited about her twins' blood samples.

• 16:42Speaker 05

  I think it was just weird that one of them had anencephaly and one of them didn't, and they were genetically identical.

• 16:47Speaker 06

  Yeah, so it's a good control study for them to compare.

• 16:51Speaker 03

  After they all took the tour, one of the researchers even told them that they had compared Thomas's blood to Callum's.

• 16:57Speaker 05

  And they found, um, there were a thousand differences in epigenetics between both twins. They're called epigenetic differences. I think their genes are the same, but the things that control the genes were different.

• 17:09Speaker 03

  That's so interesting. So they began identical, but then somehow in utero, thousand little changes crept up between them.

• 17:16Speaker 05

  Yes.

• 17:16Speaker 06

  Yeah.

• 17:16Speaker 05

  Yeah.

• 17:17Speaker 03

  It's possible that a few of those changes might one day explain the disease.

• 17:21Speaker 05

  In fact, I even asked the grad student who worked on it most closely, Dujia Krup, 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.

• 17:37Speaker 01

  So that's two roses. Like, this is, this is amazing.

• 17:40Speaker 03

  Yeah, visit two sort of kicked butt.

• 17:41Speaker 01

  She's on a roll here.

• 17:42Speaker 03

  So after visit two, they got in the car, drove down the street to this place called CytoNet, which is where Thomas's liver ended up.

• 17:49Speaker 05

  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.

• 17:59Speaker 03

  Liquid liver.

• 18:00Speaker 06

  Liver in a tube.

• 18:01Speaker 05

  Yeah.

• 18:02Speaker 03

  They went in, again, got a tour.

• 18:03Speaker 05

  Refrigerators, Petri dishes.

• 18:05Speaker 03

  The whole thing. The researchers then tell her that they had a little issue with Thomas's liver.

• 18:09Speaker 05

  His liver was bruised when they got it, so they couldn't inject it into a baby.

• 18:15Speaker 01

  Hmm.

• 18:15Speaker 03

  But then they told her that they were able to use it in an experiment.

• 18:19Speaker 05

  To determine what was the best temperature to freeze infant liver cells, which is negative 150 degrees Celsius, as you already know.

• 18:26Speaker 03

  Aye.

• 18:27Speaker 06

  Common knowledge.

• 18:28Speaker 01

  Okay, half a rose there.

• 18:29Speaker 03

  Half a rose.

• 18:30Speaker 06

  Yeah.

• 18:30Speaker 03

  And she says at one point, as they were being walked around the place.

• 18:33Speaker 05

  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. Like, I always wonder, who, what kind of person goes to work and opens up a box with a 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?

• 19:04Speaker 02

  So my name is Arupa Ganguly. I'm a professor in the Department of Genetics at University of Pennsylvania School of Medicine.

• 19:13Speaker 03

  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. She is just studying eyes.

• 19:29Speaker 01

  Where are we, by the way?

• 19:30Speaker 03

  Philly.

• 19:30Speaker 01

  Philly, Philadelphia.

• 19:31Speaker 03

  Now, she studies tumors, but she also needs healthy retinas in order to do her work.

• 19:35Speaker 02

  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.

• 20:08Speaker 03

  Sad and frustrating, she says.

• 20:09Speaker 02

  Because only when a normal child dies, that's when I can get this retina. So it's a horrible setup in my mind.

• 20:20Speaker 03

  So she says often, when the retinas arrive, which happens maybe once a year, and you pull them out of their packaging.

• 20:25Speaker 02

  You, right away, you feel like...

• 20:28Speaker 03

  Like maybe you're trading on other people's misery.

• 20:31Speaker 02

  And I mean, it's so bad when a child dies, but I am asking for his or her retina. In a way, I had this sense of guilt in my head.

• 20:46Speaker 03

  Now, Arupa had never spoken to a parent of any of her samples. So when she got that email, and she was sitting at 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."

• 21:01Speaker 02

  I paused, I stopped, and doing what I was doing. And I thought, why does the mother want to talk to me? That was my first question. So...

• 21:19Speaker 02

  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.

• 21:31Speaker 03

  And they ended up eventually talking on the phone.

• 21:34Speaker 02

  I told her, I think, at the very onset, that, Sarah, you have to understand that I feel awful.

• 21:42Speaker 05

  She said she felt kind of guilty because she wished for the sample.

• 21:45Speaker 03

  Like, almost by wishing for it. She had made it happen.

• 21:49Speaker 02

  She said, Arupa, you should not feel bad about it.

• 21:52Speaker 05

  If you didn't use my son's retina, I would have buried it in the ground. You're the only one that wanted it.

• 21:58Speaker 02

  Bad things happen to children. And so by being able to help you with your work.

• 22:05Speaker 05

  We added a layer to Thomas's life.

• 22:08Speaker 02

  That was...I was amazed.

• 22:15Speaker 03

  Eventually, Sarah and Ross visited Arupa's lab. She gave them a tour, and she showed them Thomas's retina.

• 22:21Speaker 05

  She still has samples of it in her freezer. Tiny little, I don't know.

• 22:27Speaker 03

  Tiny little vials, maybe a third the size of your pinky, filled with frozen liquid.

• 22:31Speaker 06

  Liquified retina?

• 22:33Speaker 05

  RNA. It didn't look like much, but it was amazing to think of how many people were involved getting these samples there. We had to approve it. We had to fill out this paperwork. Then the doctor had to come and remove the eyes. Then the eyes had to be processed. The eyes have to be shipped up there. Then they have to do whatever DNA process they do. And just how, I don't know, valuable, maybe even priceless, the sample is.

• 22:58Speaker 03

  Sarah says that throughout the whole process of losing a child and then seeing him reclaimed, bit by bit, by all of these different people.

• 23:07Speaker 05

  Something shifted in me.

• 23:13Speaker 05

  I 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 coworkers 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've had this feeling that I'm not the boat, I'm the ocean.

• 23:58Speaker 05

  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. It has made me feel

• 24:15Speaker 05

  powerful.

• 25:06Speaker 01

  I'd like to thank the Philadelphia Inquirer for getting us going on this.

• 25:11Speaker 03

  Yeah, especially, yeah, big thanks to Michael Vitez for his reporting and to Damio Marchetti for production support and to Latif Nasr for all that help with research. I'm Jadab Umar.

• 25:22Speaker 01

  I'm Robert Kralow.

• 25:23Speaker 03

  Thanks for listening.

• 25:30Speaker 00

  About a year after we originally aired this episode, Sarah Gray published a book with Harper One called "A Life Everlasting: The Extraordinary Story of One Boy's Gift to Medical Science." It's a memoir that dives into the world of organ donation and medical science with a different perspective on the afterlife. Sarah's also been up to all sorts of other stuff, too. She actually stayed in touch with the scientist that was working on eye cancer in the episode, Dr. Arupa Ganguly, and they became friends. And as a result of knowing her, Sarah actually wrote a nerdy rap song about Dr. Ganguly's role in a Supreme Court case.

• 26:12Speaker 00

  And then she performed that rap song live at, I didn't even know these existed, an NIH talent show. Sarah also published a beautiful short story about shame called "The Lacemaker Fairy Tale." Right now, she's working on a script for a movie as well as an album. You can find links to her book and her short story at our website, radiolab.org.

• 26:39Speaker 05

  Hi, I'm Gabby. I'm from San Francisco, and here are the staff credits. Radiolab is hosted by Lulu Miller and Latif Nasser. Soren Wheeler is our executive editor. Sarah Sandback is our executive director. Our managing editor is Pat Walters. Dylan Keefe is our director of sound design. Our staff includes Jeremy Blum, W. Harry Fortuna, David Gable, Maria Paz Gutierrez, Sindhu Nainasambandhan, Matt Keelty, Mona McGawker, Annie McEwen, Alex Neeson, Sarah Kari, Rebecca Rand, Anissa Vitza, Arianne Whack, Molly Webster, and Jessica Young, with help from Gabby Santis. Our fact checkers are Diane Kelly, Emily Krieger, Natalie Middleton, Angeli Mercato,

• 27:24Speaker 05

  and Sophie Semai. Leadership support for Radiolab's science programming is provided by the Simons Foundation and the John Templeton Foundation. Foundational support for Radiolab was provided by the Alfred P. Sloan Foundation.

• 27:48Speaker 05

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