Gray's Donation

Summary

Radiolab: “Gray’s Donation”

Podcast: Radiolab (WNYC Studios)
Episode: Gray’s Donation
First Aired: 2015; [Rebroadcast with 2026 update]
Hosts: Jad Abumrad, Robert Krulwich, Latif Nasser
Date: February 20, 2026

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Episode Overview

This deeply personal episode explores the journey of Sarah Gray and her family as they navigate the devastating diagnosis and loss of one of their newborn twins to anencephaly. Instead of letting tragedy define their experience, the Grays choose to donate their son’s organs and tissue to medical research and subsequently embark on a unique quest: to discover the tangible impact of their donation. Along the way, Radiolab investigates the ripple effect of small acts and the universal human desire to connect our stories to a larger purpose.

“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.”
—Latif Nasser [00:07]

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Key Discussion Points & Insights

1. The Diagnosis and Impossible Choices

[02:54–04:03]

• Sarah and Ross Gray learn at a 12-week scan that one of their twins has a fatal birth defect—anencephaly.
• Doctors present the option of a “selective termination” to save the healthy twin, sparking a moral and spiritual crisis for the family.
• Sarah consults two priests, introducing the Catholic “doctrine of double effect.”

Notable Quote:

“Basically, like the rule that if you... want to save the life of someone on the train tracks and you shoot the driver, that’s the right thing to do.”
—Sarah Gray [04:26; reflecting on priest’s analogy—see also Jad’s clarification at 04:53]

• At the last moment, medical risks force the doctors to call off the procedure, relieving the Grays of making the decision themselves.
• The couple prepares simultaneously for birth and impending loss.

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2. Birth, Short Life, and Immediate Loss

[06:46–09:07]

• Both twins are delivered: Thomas (with anencephaly) and Callum (healthy).
• Thomas unexpectedly survives six days, spending precious time with family at home.
• Upon Thomas’s peaceful passing, the family immediately contacts the transplant agency for organ donation.

Notable Quote:

“He died in Ross’s arms, and he was surrounded by all of the people that loved him.”
—Sarah Gray [08:44]

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3. The Decision to Donate and the Lingering Questions

[09:07–11:36]

• Sarah is inspired by another family who donated organs from a child with anencephaly.
• The Grays receive a generic thank-you letter specifying Thomas’s corneas and liver went to research facilities, but details are sparse.
• Sarah’s curiosity grows—what, concretely, came of the donation? Over a year, then two, she can’t let go of the need for specifics.

Notable Quote:

“I want to know... which researcher got it and what study are they working on.”
—Sarah Gray [09:55, paraphrased at 10:36]

• The search is also about processing grief and making sense of loss:

“I think honestly it sort of shook my faith in God and how the universe works.”
—Sarah Gray [11:10]

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4. The Quest for Answers: Visiting the Labs

a) Boston — Schepens Eye Research Institute

[11:46–14:37]

• Sarah visits the lab where Thomas’s corneas went; receptionists and staff initially confused by her call.
• Dr. James Ziske explains infant eyes are rare and invaluable:

“An infant’s eyes are worth their weight in gold... because they regenerate.”
—Dr. Ziske, via Sarah [14:03] “We’re likely still using your son’s cells right now because that’s how long they last.”
—Dr. Ziske [14:34]

Sarah is deeply moved, realizing Thomas is still helping.

b) Durham, North Carolina — Duke University & Cytonet

[16:34–18:50]

• At Duke, Thomas’s and Callum’s cord blood samples are part of a groundbreaking twin study, revealing over 1,000 epigenetic differences—an important step toward understanding anencephaly.

“For me to be surprised, that implies that I knew what to expect. We’re just at the beginning of this.”
—Deirdre Krupp, grad student researcher [17:41]

• At Cytonet, Thomas’s liver was unsuitable for direct transplantation but used in vital research to determine preservation methods for infant liver tissue.

“They had a picture of Thomas in the break room... with a little sign saying, ‘Thomas Gray was a donor here.’”
—Sarah Gray [18:53]

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c) Philadelphia — Dr. Arupa Ganguly, University of Pennsylvania

[19:24–23:18]

• Dr. Ganguly uses healthy infant retinas in pediatric cancer research. Receiving such samples is emotionally complex.

“Getting a normal retina is not a very easy task... It is not a pleasant experience... It’s sad, and every possible setting. It’s sad.”
—Dr. Arupa Ganguly [19:55, 20:28]

• Contacted for the first time by a donor’s family, Dr. Ganguly feels conflicted and guilty.

“I had this sense of guilt in my head.”
—Arupa Ganguly [20:51] “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.”
—Sarah Gray to Dr. Ganguly [22:12]

• The two labs and family members meet, view samples, and discuss the profound impact of these donations.

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5. Processing Meaning and Finding Power in Loss

[23:18–24:52]

Sarah describes how the journey changed her view of the world:

“I used to think... 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... These were Thomas’s colleagues and his co-workers and that he was a valuable partner in this important research. And I felt an even more fundamental shift—almost like... I used to feel like I was a boat on an ocean that was, like, rocky and choppy... And I had this feeling that I’m not the boat, I’m the ocean. The decisions that I make are changing other people... It has made me feel powerful.”
—Sarah Gray [23:25–24:52]

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Notable Quotes & Memorable Moments

Opening Theme:

“There are lots of moments in life when you are a piece of someone’s story... and you never get to see what impact you actually had.”
—Latif Nasser [00:07]

On the emotional logistics of living with a fatal fetal diagnosis:

“Just buying one of everything when, you know, there’s two babies coming. But we knew we’re going to be having a funeral as well... The guy’s not even born yet, you know, but I know.”
—Ross Gray [06:26–06:46]

On the power and meaning of donation, once revealed:

“An infant’s eyes are worth their weight in gold.”
—Dr. Ziske, via Sarah [14:03]

On the cosmic shift prompted by connecting with researchers:

“I felt an even more fundamental shift... I had this feeling that I’m not the boat, I’m the ocean. The decisions that I make are changing other people... It has made me feel powerful.”
—Sarah Gray [24:52]

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Important Segment Timestamps

• [00:07] — Episode purpose and theme
• [02:54–04:53] — Discovery of anencephaly and ethical dilemma
• [06:46–09:07] — Birth, time with Thomas, his passing, and the organ donation decision
• [10:36–11:10] — Sarah confronts the cosmic “why” of their tragedy
• [11:46–14:37] — Visiting Schepens Eye Institute in Boston
• [16:34–18:50] — Duke University and Cytonet: cord blood/liver donation
• [19:24–23:18] — Philadelphia, Dr. Ganguly: a scientist’s perspective and donor-recipient dialogue
• [23:18–24:52] — Sarah reflects on meaning and power found through the donation journey

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Update (2026)

[25:50–26:59]

• Sarah Gray published a memoir, A Life: The Extraordinary Story of One Boy's Gift to Medical Science.
• She maintained a friendship with Dr. Arupa Ganguly, even writing a “nerdy rap” about Ganguly’s Supreme Court case for an NIH talent show.
• Sarah also published a short story about shame and is working on a movie script and an album.

Links to Sarah’s work and stories are available at radiolab.org.
—Latif Nasser [25:50]

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Takeaway

“Gray’s Donation” is a moving meditation on what it means to persist in making meaning from heartbreak—an exploration of how the personal and scientific intermingle, how loss can ripple outward to touch countless lives, and how sometimes the most profound stories are the ones whose impact we are lucky enough to witness. The episode examines both the difficulties of organ donation and the unexpected connections and empowerment it can bring to both donor families and researchers.

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For more information, visit radiolab.org and look for “Gray’s Donation.”

Transcript

[Latif Nasser]

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. 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.

[Robert Krulwich]

I.

[Latif Nasser]

Either way, I. I think it's one of the most profound episodes we've ever put out at this show. Here it is. Gray's Donation.

[Robert Krulwich]

Yeah.

[Elizabeth Mason]

Wait, you're listening.

[Robert Krulwich]

Okay. All right. Okay. All right.

[Jad Abumrad]

You're listening to Radiolab Radio from wny.

[Robert Krulwich]

Listen.

[Elizabeth Mason]

Rewind.

[Jad Abumrad]

Hi, this is Jad.

[Robert Krulwich]

Hi.

[Jad Abumrad]

Hey, it's me, Jad.

[Robert Krulwich]

And I'm Robert.

[Jad Abumrad]

And today's story started when we bumped into an article in the Philadelphia Inquirer. Were you a little bit weirded as to why we are calling you?

[Elizabeth Mason]

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

[Jad Abumrad]

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

[Elizabeth Mason]

I'm a receptionist, swishboard operator.

[Jad Abumrad]

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.

[Robert Krulwich]

That's not a call you get every day.

[Elizabeth Mason]

I just remember it was just very unusual.

[Robert Krulwich]

Right.

[Elizabeth Mason]

I didn't know what to do with it. I just felt like, I gotta find somebody to help this woman.

[Jad Abumrad]

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.

[Sarah Gray]

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

[Ross (Roscoe) Gray]

I'm Roscoe. I'm Thomas's dad.

[Jad Abumrad]

And how did you guys meet while we're.

[Ross (Roscoe) Gray]

We met in a bar in Glasgow.

[Jad Abumrad]

Really?

[Sarah Gray]

Yeah, I was on vacation with a girlfriend.

[Jad Abumrad]

And was it. Was it a. Was it what happened without getting into too many.

[Ross (Roscoe) Gray]

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

[Sarah Gray]

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

[Jad Abumrad]

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?

[Sarah Gray]

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.

[Jad Abumrad]

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

[Sarah Gray]

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.

[Jad Abumrad]

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

[Ross (Roscoe) Gray]

A bit of a shock, obviously.

[Jad Abumrad]

Yeah.

[Sarah Gray]

I couldn't believe it.

[Ross (Roscoe) Gray]

Yeah, you just kind of. It's difficult to process it, I think. You think that can't be right. They've just told us it's identical twins, but one of them is completely different from the other.

[Sarah Gray]

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.

[Jad Abumrad]

So Sarah says they were suddenly faced with this choice.

[Sarah Gray]

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

[Jad Abumrad]

Really?

[Sarah Gray]

Yeah.

[Jad Abumrad]

Her family's Catholic. She was raised Catholic.

[Sarah Gray]

I don't know. I guess I wanted to see what, what their take was on this. Yeah, this is probably not the direction we want to go to for this radio story, but.

[Jad Abumrad]

No, I mean, I'm suddenly interested.

[Sarah Gray]

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

[Jad Abumrad]

And what'd they say?

[Sarah Gray]

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.

[Jad Abumrad]

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.

[Sarah Gray]

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.

[Jad Abumrad]

Fast forward a few weeks.

[Sarah Gray]

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 him on the screen and we sort of were attached to this little kid.

[Jad Abumrad]

Next day, they go in for the procedure.

[Sarah Gray]

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, you're gonna bleed uncontrollably, and this is not safe to do.

[Ross (Roscoe) Gray]

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

[Jad Abumrad]

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

[Sarah Gray]

Relief.

[Jad Abumrad]

Was it relief?

[Ross (Roscoe) Gray]

Yeah, it was a relief.

[Sarah Gray]

Oh, my God. We, like, got in the elevator, we

[Ross (Roscoe) Gray]

just hugged, and we're like, the decision's taken out your hands, you know, so

[Sarah Gray]

it's not our fault.

[Jad Abumrad]

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

[Sarah Gray]

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

[Jad Abumrad]

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

[Ross (Roscoe) Gray]

Just buying one of everything when, you know, there's two babies coming. Then we knew we're going to be having a funeral as well. So, you know, I called the. What you call it, the funeral director and told them, you know, we're going to 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.

[Jad Abumrad]

All right. So they get to the day of March 23rd. 23rd, okay, 2010, 10:30am Thomas came out

[Sarah Gray]

first, and he's the sick one that had anencephaly. And then a minute later, Callum 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.

[Ross (Roscoe) Gray]

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 and he was doing pretty good.

[Jad Abumrad]

And then, 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

[Ross (Roscoe) Gray]

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

[Jad Abumrad]

What was that like, Ross?

[Robert Krulwich]

It was.

[Ross (Roscoe) Gray]

It was. You know, it was cute. You know, it 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 him a cuddle, you know, and try and stop him crying and cheer him up.

[Sarah Gray]

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.

[Jad Abumrad]

They ended up taking him home.

[Sarah Gray]

I 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.

[Ross (Roscoe) Gray]

Seems all right. You know, he could hang in here for a while, you know.

[Jad Abumrad]

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

[Sarah Gray]

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.

[Jad Abumrad]

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

[Ross (Roscoe) Gray]

Six days.

[Jad Abumrad]

Six days.

[Sarah Gray]

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 D.C. children's National Medical Center.

[Jad Abumrad]

Okay, so this is where the story really gets going. I guess. So how did that idea of donating his organs, get it come into your head?

[Ross (Roscoe) Gray]

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

[Sarah Gray]

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

[Jad Abumrad]

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

[Ross (Roscoe) Gray]

Nothing happened. Nothing happened after that for A long. For a long time, you know, you.

[Sarah Gray]

I think we got some letters.

[Ross (Roscoe) Gray]

We got a letter in the mail,

[Jad Abumrad]

I guess, 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 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.

[Sarah Gray]

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.

[Jad Abumrad]

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.

[Sarah Gray]

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.

[Jad Abumrad]

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

[Sarah Gray]

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

[Jad Abumrad]

tried, you know, but she couldn't quite let it go.

[Robert Krulwich]

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

[Jad Abumrad]

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?

[Ross (Roscoe) Gray]

I don't know.

[Sarah Gray]

I mean, I think honestly it sort of shook my faith in, 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.

[Jad Abumrad]

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,

[Sarah Gray]

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.

[Jad Abumrad]

That's where Thomas's corneas had been sent. Lunch break.

[Sarah Gray]

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. Is there any chance I can come by for a tour for, like, 10 minutes?

[Jad Abumrad]

That must have been a weird phone call.

[Sarah Gray]

Yes. I mean, yes.

[Elizabeth Mason]

Yeah, that was like a wake her

[Jad Abumrad]

up or that's Elizabeth Mason again.

[Elizabeth Mason]

It was just very unusual.

[Sarah Gray]

I think she was surprised.

[Elizabeth Mason]

I didn't know what to do with it.

[Jad Abumrad]

Had you ever gotten a call like that before?

[Elizabeth Mason]

Never have gotten a call.

[Jad Abumrad]

And she's been working there for 25 years.

[Sarah Gray]

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

[Elizabeth Mason]

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.

[Sarah Gray]

It's gonna take me a while. Cause 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.

[Jad Abumrad]

Oh, like. Like the development department?

[Sarah Gray]

Yeah.

[Robert Krulwich]

Not.

[Ross (Roscoe) Gray]

Not an organ donor, but they.

[Sarah Gray]

Cause 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.

[Jad Abumrad]

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.

[Sarah Gray]

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.

[Jad Abumrad]

She was taken around, and eventually she got taken to the lab where Thomas's

[Sarah Gray]

corneas went, 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 who I was, and he said, you know, thank you for the donation, and do you have any questions for me?

[Jad Abumrad]

Of course she did.

[Sarah Gray]

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?

[Jad Abumrad]

He put down his lunch and he

[Sarah Gray]

said, most of the eyes that we get are from people who are older. Just because most people are older when they die. An infant's eyes are worth their weight in gold. I was like. 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

[Robert Krulwich]

because

[Sarah Gray]

that's how long they last.

[Robert Krulwich]

Wow.

[Sarah Gray]

I know.

[Jad Abumrad]

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.

[Robert Krulwich]

How many doctors might that be? Do you have any idea?

[Jad Abumrad]

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

[Robert Krulwich]

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.

[Jad Abumrad]

That's true.

[Robert Krulwich]

She's not heading for validation necessarily here. She might find. She might get further lost. Well, yeah, but she's gonna go.

[Jad Abumrad]

She's gonna go, and she's not gonna stop, so cross your fingers. It's

[Latif Nasser]

Radiolab is supported by Planet Visionaries, the podcast created in partnership with the Rolex Perpetual Planet Initiative. The show is hosted by Alex Honnold, who you may recognize from Free Solo, where he climbed El Capitan without ropes. Now he's turning his focus to the biggest challenge of protecting the only planet we've got. Previous guests include Mark Ruffalo, conservationist and actor, who discusses how he's leveraged storytelling to galvanize community. And upcoming guests include David Gruber, marine biologist and professor known for his research on bioluminescence and innovative underwater imaging techniques, in partnership with the Rolex Perpetual Planet Initiative. This is Planet Visionaries. Listen or watch on Apple, Spotify, YouTube, or wherever you're listening to this podcast.

[Jad Abumrad]

Hey, I'm Jad Abumrad.

[Robert Krulwich]

I'm Robert Krulwich.

[Jad Abumrad]

This is Ray Gray.

[Robert Krulwich]

Where are we at this point today?

[Jad Abumrad]

Okay. Yeah. So Sarah Gray, when we left her, she was standing in a research office in Boston and feeling Good.

[Robert Krulwich]

Yeah.

[Jad Abumrad]

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

[Sarah Gray]

south to Durham, North Carolina, to track

[Jad Abumrad]

down Thomas liver and a bit of his blood.

[Sarah Gray]

Cord blood.

[Jad Abumrad]

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 andencephaly.

[Robert Krulwich]

Mm.

[Jad Abumrad]

She says. They walked in, we met the study

[Sarah Gray]

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

[Jad Abumrad]

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

[Sarah Gray]

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

[Ross (Roscoe) Gray]

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

[Jad Abumrad]

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

[Sarah Gray]

and they found there were a thousand differences in epigenetics between both twins.

[Robert Krulwich]

Huh.

[Sarah Gray]

They're called epigenetic differences. I think their genes are the same, but the things that control the genes were different.

[Jad Abumrad]

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

[Sarah Gray]

Yes.

[Ross (Roscoe) Gray]

Yeah, yeah.

[Jad Abumrad]

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

[Sarah Gray]

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.

[Robert Krulwich]

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

[Jad Abumrad]

Yeah. Visit two sort of kicked butt.

[Robert Krulwich]

She's on a roll here.

[Jad Abumrad]

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.

[Sarah Gray]

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.

[Jad Abumrad]

Liquid liver.

[Ross (Roscoe) Gray]

Liver in a tube.

[Sarah Gray]

Yeah.

[Jad Abumrad]

They went in again, got a tour,

[Sarah Gray]

refrigerators, Petri dishes, the whole thing.

[Jad Abumrad]

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

[Sarah Gray]

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

[Jad Abumrad]

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

[Sarah Gray]

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

[Ross (Roscoe) Gray]

Common knowledge.

[Robert Krulwich]

Okay, half a rose there. Half a rose, yeah.

[Jad Abumrad]

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

[Sarah Gray]

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 29, 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 what kind of person goes to work and opens up a box with 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.

[Arupa Ganguly]

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

[Jad Abumrad]

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.

[Robert Krulwich]

Where are we, by the way?

[Jad Abumrad]

Philly.

[Robert Krulwich]

Philly. Philadelphia.

[Jad Abumrad]

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

[Arupa Ganguly]

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. And every possible setting. It's sad.

[Jad Abumrad]

Sad and frustrating, she says, because only

[Arupa Ganguly]

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

[Jad Abumrad]

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

[Arupa Ganguly]

packaging, you right away you feel like.

[Jad Abumrad]

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

[Arupa Ganguly]

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.

[Jad Abumrad]

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.

[Arupa Ganguly]

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

[Robert Krulwich]

So

[Arupa Ganguly]

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.

[Jad Abumrad]

And they ended up eventually talking on the phone.

[Arupa Ganguly]

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

[Sarah Gray]

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

[Jad Abumrad]

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

[Arupa Ganguly]

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

[Sarah Gray]

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.

[Arupa Ganguly]

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

[Sarah Gray]

layer to Thomas's life that was.

[Arupa Ganguly]

I was amazed.

[Jad Abumrad]

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

[Sarah Gray]

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

[Jad Abumrad]

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

[Ross (Roscoe) Gray]

Liquefied retina rna.

[Sarah Gray]

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. And then they have to do whatever DNA process they do. And just how, I don't know, valuable, maybe even priceless. The sample is.

[Jad Abumrad]

Sarah says that throughout the whole process, you know, of losing a child and then seeing him reclaimed bit by bit

[Sarah Gray]

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 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. It has made me feel powerful.

[Robert Krulwich]

Sam. Okay, like to thank the Philadelphia Inquirer for getting us going on this.

[Jad Abumrad]

Yeah, Especially, yeah. Big thanks to Michael Vitez for his reporting and to Damio Marchetti for productions Port, and to Latif Nasser for all that help with research. I'm Jad Abumrad.

[Robert Krulwich]

I'm Robert Krulwich.

[Jad Abumrad]

Thanks for listening.

[Latif Nasser]

About a year after we originally aired this episode, Sarah Gray published a book with Harper One called A Life 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. 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

[Gabby Santis]

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 Sandbach is our executive director. Our managing editor is Pat Walters. Dylan Keefe is our director of sound design. Our staff includes Jeremy Bloom, W. Harry Fortuna, David Gable, Maria Paz, Gutierrez, Sindhu Nainasambandan, Matt Kielty, Mona McGacher, Annie McEwen, Alex Neeson, Sarah Khari, Rebecca Rand, Anisa Vitze, Arian Wack, Molly Webster, and Jessica Young, with help from Gabby Santis. Our fact checkers are Diane Kelly, Emily Krieger, Natalie Middleton, Angeli Mercado, and Sophie Semey. 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.

[Robert Krulwich]

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[Sarah Gray]

Since WNYC's first broadcast in 1924, we've been dedicated to creating the kind of content we know the world needs. In addition to this award winning reporting, your sponsorship also supports inspiring storytelling and extraordinary music that is free and accessible to all. To get in touch and find out more, visit sponsorship.wnyc.org.