Hey, this is RadioLab on Lots of Nosser, 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. 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, Grey's donation. Listening to RadioLab from WNYC. Rewind.
Hi, this is Jad. Hi. Hey, it's me, Jad. I'm Robert.
And today's story started when we bumped into an article in the Philadelphia Inquirer. We're a little bit weird as to why we are calling you. Yes. I know, you know, I mean, I just don't understand the whole thing.
Story really gets going with a phone call to this woman, Elizabeth Mason. I'm a receptionist, last switchboard 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. It's not a call you get every day.
I just remember it was just very unusual, right? And I decided to 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 take their story. So for my title, I say, I'm Sarah Gray. I'm the mom.
I'm Rose Gray. I'm Thomas is that. And how did you guys meet? Well, we met in a bar in Glasgow.
Really? Yeah, I was on vacation with a girlfriend. And was it was it was it was it what happened? That didn't mean we've got different ideas and different recollections will happen.
We 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 called 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 in it.
And it would die within a few minutes or hours of being born. 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 Ann is definitely is. I'm not for shock, obviously. I can't believe it. Yeah, you're just kind of difficult to process it.
I think you think, no, that can't be right. They've just told us this identical twins, but one of them is completely different from the other. It's not a fictional to me. Making matters worse.
The doctor 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. So Sarah says they were suddenly faced with this choice. I actually talked to priests on the phone about it.
Really? Yeah. 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, but I'm.
No, I mean, I'm suddenly interested. Basically, what I was saying is would you come into a blessing over the selected termination? And what 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, 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. 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. 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. That's for a few weeks. We booked a hotel and we packed our bags and the night before was really terrible for both of us because, I don't know, we had seen them on the screen and we were attached to this little kid.
Next day, they go in for the procedure. We go into the room and the doctor puts the sonogram on me and start getting ready. And he said your placentas moved since the last time you were here. 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 they wouldn't do it on his wife. What was that like to be on the table?
You've got to leave. Was it relief? Yeah, it wasn't relief. Like we've got an elevator.
We just hugged and were like, oh, the decision's taken at you hands. It's not our fault. But then your healthy twin is more at risk, maybe. Yes.
It 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 all those two babies come in. And when you were going to be having a funeral as well.
So, you know, I called the funeral director and told them, you know, we're going to be having a funeral. And like, well, when was the death? I don't know if you guys know that. All right.
So they get to the day of March 23rd, 2010, 10 30. Thomas came up first and he was the sick one that had him in Cefoli. And then a minute later, Calum came out and 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.
He didn't think he was going to last too long, but then he kind of he rallied and he was doing pretty good. And then. Adley, it was then Calum, 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.
I said, we were just sitting together. What was I like? It was, it was, you know, it was cute. You know, it was like a brand new baby, you know, Nick, right?
But he was like grabbing onto my finger and I don't know, doing kind of things that babies do, you know, there's nothing you can do, but just kind of give him a cuddle, you know, and trying to try and stop and cry and do, you know. 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 he could feed him with a bottle. They ended up taking him home. I didn'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.
All right. And we could hang in here for a while. 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. Well, so how long did Thomas live? And he had six days. Six days.
He died in Ross's arms and he was surrounded by all of the people that loved him. 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. OK, so this is where the story really gets going.
I guess. So how did that idea of donating his work and getting it coming to your head? Did you see an article in the paper, a newspaper article or something? Yeah, my mom's on article about a baby who had Ann Cefoli who donated liver cells and most major religions support organ donation.
OK, so the van came picked up Thomas. What happened next? Nothing happened. Nothing happened for a long time.
You know, I think we got a letter in the mail, I guess sort of form letter. It basically said, thank you for your generous donation. Thomas is a corneas who was sent to this place in Boston where they study potential cure for blindness and his liver has 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, like, 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 calendar A's so 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 could 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. 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, OK, well, I tried, you know, but she couldn't quite let it go. You mean she couldn't quite let it go?
You know, curiosity, but I also think she was having on some level, like a big conversation with the universe. They both were like this terrible thing happened. How do you explain it to yourself? I mean, I think honestly it sort of it sort of shook my faith in God and how the universe works.
I thought that karma worked or if I was a basically a good person and I obey the rules, good things would happen to me. 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 were just kind of come in and out of her mind, but then around the two year anniversary, since 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 Skype and Zai Research Institute was just a few miles away.
That's where Thomas is. Corny has been sent lunch break. That's exactly what I did. I called Skype 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? That was a weird, weird phone call. Yes. I mean, yes.
Yeah, that was like a waker up. 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 gone to go like that before? Never had gone to go. 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 say, please tell them why I started searching for someone to speak with her. It's going to take me a while because I got to figure out who that is. Don't hang up and they connected me with someone in donor relations, but it was financial donor relations. Oh, like, like the development department.
Yeah, not an organ donor. But 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. 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. 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. She was taking around. Eventually she got taken to the lab where Thomas is going.
And there were refrigerators with signs that said no food. And then she introduced me to this guy called Dr. James Ziske, who's a professor of ophthalmology at Harvard Med School. And he was eating his lunch at his desk and she explained to 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?
Like 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. I was like, could barely speak.
It's like, oh, could you tell me why? He said, because they regenerate the regenerative properties. And he said, if you know, I'm 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.
That's how long they last. Wow. I know. So at that point, Sarah was like, OK, since that worked out so well, why not just go and keep going with it and visit all of the places where bits and pieces of Thomas ended up.
So, you know, check down as liver, his retina, his cord, but how many doctors might that be? 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.
Phil, what if what if it turns out that these people, you know, didn't find anything, you know, researchers research, you don't always have a hit. That's true. She's not hitting for validation necessarily here. She might find it.
She might get further lost. Well, yeah, she's going to go. She's going to go and she's not going to stop. It's across your fingers.
It's coming up. Hi, Lulu here. And this episode is sponsored by BetterHelp. May is Mental Health Awareness Month and as someone who reports on mental health who likes talking to people about their mental health and what they look to in science, in the natural world, in faith, in friendship, wherever it may be to help guide them through the rough patches of life.
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Hey, I'm Jad Abumran. I'm Robert Krollwich. This is really hard. We at this point.
OK, yeah. So Sarah Gray, when we left her, she was standing in a research office in Boston and feeling good. Yeah. She's getting this rose of success.
And so after that, her and Ross hit in a car and head down south to your North Carolina to track down Thomas's liver and a bit of his blood, cord blood, because it turns out that in the delivering 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 and Encephaly. 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 twin's blood samples.
I think it was just weird that one of them had Encephaly 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's blood to Calum's. And they found 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. That's so interesting. So they began identical, but then somehow in utero, a thousand little changes crept up between them.
Yes. Yeah. Yeah. And 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 was closely during your crop. It was a re-surprise 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.
So that's two roses. Like this is amazing. Yeah, but she's on a roll here. So after it was at two, they got in the car drove down the street to this place called Cydonet, which is where Thomas's liver ended up.
Basically, Cydonet 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 in the tube. They went in again, got a tour for refrigerators, petri dishes. No thing.
The researchers then tell her that they had a little issue with Thomas's liver. Because the liver was bruised when they got it. So they couldn't inject it into a baby. But 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.
I come in 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. St. Thomas Gray was a donor here in March 29th, 2010. And I was so excited to see that because I thought they were just as curious about us as we are about them.
Like I was wondering 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 ones, liver, and puts it in a box and mail it over here. So my name is Arupa Ganguli. I'm a professor in the Department of Genetics at University of Pennsylvania School of Medicine.
Now Arupa Ganguli just switched to her for a second. She studies a kind of cancer of the eye called retinoblastoma, 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. Where are we, Billy? Billy, Philadelphia. 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. So it's a horrible setup in my mind.
So she says often when the retinas arrive, which happens to me once a year and you pull them out of their packaging. You right away, you feel 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. In a way, I have the sense of guilt in my head.
No, Arupa had never spoken to a parent of any of her samples. So when she got that email and she was sitting on a 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. 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 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.
He said she felt kind of guilty because she wished for the 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 happened to children. And so by being able to help you with your work, we added a layer to Thomas's life. That was I was amazed.
Eventually, Sarah and Ross visited Arupa's lab. She gave them a tour and she showed them Thomas's retina. She still has samples of it in her freezer. Tiny little, I don't know.
Tiny little vials may be a third the size of your pinky filled with frozen liquid. Liquified right now. 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, then 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 by bit by all of these different people. Something shifted in me.
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 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've had this feeling that I'm not the boat on the ocean. Like the decisions that I make are changing other people as opposed to just I'm about getting slapped with waves all the time. It has made me feel powerful.
Like to thank the Philadelphia Inquirer for getting us going on this. Yeah, especially. Yeah. Big thanks, Michael Vitez for his reporting and to Daimio Marchetti for Production Sport and to Lothaf Nasser for all that help with research.
I'm Chad Akumran. I'm Robert Krollich. Thanks for listening. 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 Boys 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 has 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. And then she performed that rap song live at, I didn't even know this existed, an NIH talent show.
Sarah also published a beautiful short story about shame called The Lace Maker 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. Hi, I'm Gabby.
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