E41: More Than Medicine: Humanity, Loss, and the Limits of AI with James G Robinson

In this deeply moving episode, James G. Robinson shares the story of his son Nadav’s battle with complex congenital heart disease—and the profound lessons learned along the way about medicine, humanity, and decision-making under uncertainty. Drawing on his background in data and analytics, Robinson explores the role of AI in healthcare, emphasizing that while technology can inform better decisions, it cannot replace the human relationships and judgment at the heart of care. This conversation offers a powerful perspective on what families truly need—and what the future of pediatric medicine must preserve.

This episode is brought to you by BevelCloud—powering distributed AI in healthcare and driving the Pediatric Moonshot forward. Learn more at BevelCloud.ai."

Transcript

SPEAKER_01 0:13

Good morning, good afternoon, good evening, everyone, to another edition of the Pediatric Moonshot Podcast series. Today I'm very uh pleased to have James G. Robinson join us. As many longtime listeners of the podcast know, we predominantly have had people who are clinicians, CEOs of children's hospitals as guests. And James is a very different kind of guest for us today, but I'm very appreciative that he's joined us. By way of introduction, he is the author of the book More Than We Expected, a memoir about navigating five years of complex congenital heart care for his son. His experiences from three surgeries to a medical crisis that left his family stranded halfway around the world, and we'll get into that, transformed how he thinks about medicine, data, and what families really need. He has a unique perspective because he's the former director of data products at the New York Times. Uh he brings a very interesting perspective to our conversation about the future of AI and children's medicine. So uh hello, James. Hi, Timothy. It's good to be here. Uh well let me start with first my condolences on the loss of your son. Uh can you tell us his name and tell us the story that you've been through over these past years?

SPEAKER_00 1:40

Yeah, his uh his name is Nadav. He's one of three sons that we have. Um I appreciate the condolences because obviously when you lose a child at the age of five, it's it's quite tragic. But but part of the reason I wrote a memoir was to explain why his life was an incredible privilege um and how I don't uh regret it uh at all, which sounds like an unusual thing to hear, but but hopefully once you hear my story, you'll understand why why that's true. Um He was diagnosed uh in utero with um a series of very serious congenital heart defects caused by something called pili primary ciliary dys uh dyskinesia, PCD, um, which basically meant that he had heterotaxy, his organs were all kind of like kind of in the wrong place, and the most immediate problem was with his heart. Um we're from New York, we uh we uh our home hospital is Mount Sinai Hospital in New York, uh, and he ended up having to have three surgeries uh there before the age of four. One at five days, one at five months, and another at uh four years. And when you're in a parent in this situation, it totally redefines what um what parenthood means. You come face to face with the unknown in many ways, and that's both a terrifying thing, but also kind of a wondrous one. Like you understand the the magical processes uh uh processes that form our bodies. Uh and it's quite humbling to be in that situation. But um we had to ad we we had to become his medical caretakers, we had to become experts in pediatric cardiology, uh, we insisted on being part of the medical team. Um, but we also insisted on giving him, you know, hopefully in its normal life as possible. He has two brothers, one a twin and one four years older. Um this was 14 years ago that he was born. And so for us, that meant traveling. Um we went everywhere we could. We drove down to Franklin Institute in Philadelphia where they have a giant heart. I don't know if you've ever been there, which we walked through and actually like pointed out which things were missing from his anatomy. Um we took him to the beach in North Carolina, we had a chance to go to San Diego, so went out there, and and it was great. And and after his third surgery, he had the opportunity to go to a country that I love, uh, which is Australia. James, James, let's do a hold.

SPEAKER_01 3:46

I'm not sure. I'm and Julie, are you seeing this? I feel like I get dropouts every like uh minute and a half.

SPEAKER_00 3:56

No, I've been it's been okay on my side.

SPEAKER_01 3:58

Then it's just me. Um okay, we can just we could because we could do this in post-production. So you could just keep going, James, and we'll edit to close it up. Yep.

SPEAKER_00 4:12

So um after his um after his third surgery, we had the chance to go to Australia, which is a country that I have deep roots uh in. My mother's Australian, my father's New Zealander. We had taken his older brother when he was born to Australia to meet his great-grandfather, which was very meaningful. Um, and we discussed with his doctors whether that was the right decision, and and we were lucky to have doctors who considered not just um narrowly the medical focus, but also what it means to live, right? And and living is not just dying, right? It's also experiencing life, right? And and so we decided to take him to Australia. Um, it was a wonderful experience, but unfortunately, while we were down there, um he experienced a clot in his circulation, which required emergency surgery. Um, and as you said, we were left stranded there. Um him recovering from from kind of like you know, a horrible situation, not knowing whether he'd make it or not, uh, with his two brothers far from home. Uh and the book that I wrote is really the story of his life and that journey and what we learned there. Um we saw amazing things, uh, we saw miracles, one of which was us being able to return to the United States, um uh which I can tell you more about if you're interested, but you can also read the book. Um but the but the important thing is we learned a lot about the practice of medicine and and the healthcare system, and and being uh admitted to at least three different hospitals, our home hospital in New York, Children's Hospital Westmeat in Sydney, and then eventually Children's Hospital of Philadelphia, and then Columbia in New York. We were exposed to all sorts of interesting perspectives on medicine. Um and after he died, uh a year later, uh I decided to write down what we had learned for posterity, uh, mainly for his brothers so that they would understand what we went through when they become parents, but also for people who care for children like our son, both families and clinicians, in the hopes that it would help them do their jobs. And I've been very hard since the book was published, to be invited to speak to many, many different communities in many, many different forms, including this one. Uh, and I have been told that that the insights that we experienced as his parents in this medical care that we that we had a crash course in uh really helps people, people caring for these kids, which is which is hugely gratifying.

SPEAKER_01 6:29

But before you get to those insights, I mean you and I talked obviously before this. I was just totally fascinated. This, like, there were doctors that came in from Philadelphia all the way to Sydney. I mean, you tell that part of the story, yeah.

SPEAKER_00 6:43

Uh the situation was this he he was not a candidate for surgery. Um, you know, his his body was not up for it. And there was really nothing that could have helped him after that fourth surgery, that emergency surgery. Um, so it was kind of an academic question of how you would get him home because there was no reason to bring him home. Um, and and it was quite risky, anything that we could think of. Until my wife, who reads medical journals for fun, found a paper written by an interventional cardiologist at Children's Hospital of Philadelphia, a guy named Dr. Jack Rome, in which he described a new procedure which had been performed on three patients, um, which was an intervention which was not surgical, that that that had the potential to help him. And because he had done that, it became a medical justification to bring him home. Suddenly the insurance was able to pay for it, and we could start considering how to do it. And we were lucky to have on both sides of the world incredible, you know, teams who could work out actually how to do it. This is this had never been done before. It was the furthest that Chop had ever transported somebody this sick. Um, and they worked out a plan which involved a Gulf Stream 3, specially equipped, which had been used for all sorts of purposes, like evacuating the Ebola patients from Africa, uh Ebola doctors from Africa. It'd been used for like rendition of terror suspects, like the plane that you get when you're in a crisis. And these amazing team from CHOP flew down. They flew from uh Philadelphia to Oakland, Oakland, Hawaii, Hawaii to Fiji, Fiji to Sydney. They landed with blue jumpsuits and American flags on their shoulders, CHOP transport in the back, and they met with the doctors there. Uh, they had an amazing plan to make it happen. Although we were under no illusions, it was quite a risky thing that it was guaranteed that he would make it back alive, but luckily he did. Uh, and we found ourselves close enough to home. I mean, for New York or Philadelphia is kind of in a territory, but but they rolled out the red carpet for us. So uh so yeah, it was kind of an incredible adventure, and and and seeing those sorts of miracles and seeing people who have devoted their careers to helping your child is really humbling and impressive. You know, as a parent, uh we didn't choose to be in this situation. It was thrust upon us. But over and over again, during his life and after his death, I've met people who have who have dedicated their careers to this, and and I make sure I tell them that that I'm very grateful that they did because as a parent, it's very meaningful to know that that these people exist and they're here to help.

SPEAKER_01 8:59

Yeah, yeah. And I and you said it. I mean, none of the people in pediatrics are in it for the money. Way easier ways to make money than what they do. Uh, you mentioned insights, uh, what you learn. Can you talk a little bit about that?

SPEAKER_00 9:16

The biggest lesson that we have, and the thing that I talk most frequently about when I talk to doctors and families, is the importance of understanding that we are all human and how important that is in medical care. Um, I I think you know, sometimes parents view doctors as like all-knowing gods or have magical powers or healing. And and one of the things we learned when we were in Australia was um that the doctors in Australia had a different perspective on their role uh compared to the doctors that we'd met uh elsewhere, and that was that they could not heal Nadav. Only Nadav could heal himself. Um and their role was basically to give him the best opportunity that he can could to heal himself. And that showed a deep respect for the powers of healing. And when you look into the science of how we've how we grow and how we heal, it's just like mind-boggling. And you don't really realize that until something goes wrong, right? You take it for granted. Uh, when our first son left the hospital when he was born, I had the miracle of life on my head, right? And I I could not so profound, right? But when when our second son had his surgery, I learned the processes that formed the body, and that's even more profound, right? So so that humanity is is really important because because I think humility is a really important part of this. Being able to admit what you don't know on the part of a doctor is probably the biggest kindness that you can give a family. Um it may be frustrating the family to not know, but ultimately there are many things that we don't know. And what we learnt as basically medical practitioners is how much ambiguity there is in science, especially with rare diseases like this that are so that are so infrequent and unknown, right? And you find yourself pushing up against this unknown and being frustrated by it, but if you can admit um that that we make decisions kind of in in a miasmic fog of of not knowing, um, then I think it makes it easier to be at peace with the outcomes no matter what they may be, right? Um the the other thing that we learned was how important it was to form strong bonds with the doctors, and that was also a human thing. Um I'm terrible with names, right? I I cannot remember any name. I'm glad you have the name of the corner of this Zoom because I would probably have forgotten it by by now. Um my wife is good with it, but still, like if if I spend the whole time with the doctor trying to remember what their name is, that's not a productive conversation. And and likewise, they need to know our names because we're part of the medical team. And so many medical professionals, and this is not a bad thing, they're busy, right? We know all this, right? But they would call us mom and dad. And we're not mom and dad. We're not even mom and dad to our own kids. We're Abba and Ema, right? We speak they speak they speak Hebrew, right? So, so um, so yeah, so so understanding that like you have to form that bond and you have to treat people with respect, and the respect is basic human things, uh, is super important. The last thing I'll say on this note in terms of humanity is just the idea of of pushing the boundaries about what it means to be in a healing environment. Uh, when we were in Australia, um one of the doctors there in charge of the unit, right after some devastating news about his condition, decided that he was going to take Nadab outside. This is a kid who's intubated, he's critically ill, and he says we're gonna take him out to the playground. And it wasn't out of pity, it wasn't out of palliative care, it was just the it was just the the need to know that like as a kid you need to be in the right environment. And that was in the fresh air, listening to the birds, touching the flowers, smelling them if possible, and and watching his brothers play. And it was a great kindness. And and and after that, we pushed the limits of what was possible. Even when we're back in the States at Child Hospital, Philadelphia, we did all sorts of things to like get him out of bed and into healing environments where he could thrive or at least heal. Um, and that was a huge insight because I think not a lot of parents or people in this situation know what is possible um on either side of the bedside, whether it's the parents or the doctors, and and that's something I try to share as well.

SPEAKER_01 13:09

Um, I don't know that we said this to the listener. I mean, uh I think your son underwent all this amazing care, but what was the end of the story?

SPEAKER_00 13:19

Um well, we got back to Philadelphia, he spent six months there. Um it was only uh kind of cutting-edge lymphatic intervention that that allowed him to go home. We were frustrated by something, and it turns out that that the most unknown part of the anatomy in the cardiac kit is the lymphatic system, it's hugely important. Um we knew that h his life would e might end at some point. Even when he was born, these these surgeries are only try designed to get you to to teenage years where you might be eligible for a transplant. And certainly after all he'd been through, we knew that that it was likely that that his time would run out, and it did. Unfortunately, he died uh that January at the age of five. Um and again that was a a sad thing, but as I held him, I felt nothing but pride. Uh because as a parent, you live for moments of pride in your kids. And while he didn't graduate college and he didn't have a girlfriend, and he didn't get married, and he didn't have kids, we had more moments of pride in his life than I think many parents have in a lifetime. So we were grateful about that time that we had with him because that that was his life. And now for people like you and people who read the book, they get to know him as well and hopefully learn from his experience.

SPEAKER_01 14:27

So uh, I mean, some of your insights are just terribly profound. Uh let's move to the mundane. Your former director of data products. So what what do you think about data AI? How could it make a difference in the family experience? How could it make a difference in clinical care? So would you yeah.

SPEAKER_00 14:51

Yeah, so it's funny you asked that because I do I do work in data, but what what and analytics and audience stuff? That was my career at the times for 20 years, and and um I didn't lose because I lost interest in it. I left because the challenge of finding an audience and using analytics and data to build my own audience is actually quite compelling, right? So so I get to do that now with my book, and I've spent this time building a huge network, which now includes you, and I'm very grateful for it. Um but but the data work that I've done over the years has always been about it's always been in the service of people and humans, right? You can build systems that are autonomous, that run on their own, that don't require any human intervention. That's fine. That's not my specialty. My specialty is how do you leverage technology and data to have people make better decisions? Um and in fact, one of the things that I've done since my memoir was published is is try to get my head around AI by having it try to inform the decision making that I'm doing as I build these networks and learn, you know, the audience for my work and the people who need to read it. And there are people out there who need to read them, they they tell me that, and my job is is to find them. Um and I'm using AI to help help with that. But but I think the one thing that's important is in my mind, and this might be a controversial statement, that the purpose is not to replace humans, it's it's to help them, is to help them, right? And um I think a lot of people at the times had a great fear of data, that it would you know erode news judgment, that it would determine what they do, it would steer them in bad directions. But if you do it right, it can really and you define success in the right way, it can really help you focus in on that success and get you the right place. Um, if you are cognizant of all the dangers and seductions that that might steer you wrong. Um, so that's definitely a part of my career history and something that I'm really excited to pursue uh moving forward as well.

SPEAKER_01 16:36

Well, and I think we we feel like it's the challenge of not everybody, we like to say, not everybody lives in Palo Alto and Mom works for Google. I mean, there's plenty of kids who really have no access, and how can we use AI to bring some of the expertise that children's of Philadelphia or in Sydney or whatever to the kid that isn't, as the Brits like to call it, post-code lucky.

SPEAKER_00 17:01

Yes, I I think that's that's great, and that's a noble goal. I think there is a fallacy, and maybe that's sometimes directed to doctors or systems, that there is some magical thing that can solve your problems and have all the answers. And for many of these things, nobody has all the answers. In fact, nobody has many answers, right? And so if you can use it as a way to instruct your own autonomous decision-making as a human being and help you understand the context by which you make the decisions, I think that's useful and and and great. But I don't think it replaces that decision-making power, and I don't think it replaces the need for people to have human discussions about things that are really human topics. Because when you're in this situation, it's not just a technical problem of fixing a child's heart, right? It is a multi-layered, extraordinarily complicated uh crash course on what it means to live, right? And living is not just fixing or healing, it's the whole life. The biggest decision that we made in his life was to go to Australia. Um, and my wife has a lot of regret about that ch that decision, right? And I do not. That's fine. We're different people, and I see both sides of it. In fact, that's the large core of the book is was it the right decision to go? And explaining my perspective that I don't regret anything when maybe people look at it and say, How could you take a five-year-old kid who just had three heart surgeries halfway around the world, right? Um AI will never tell me if that was the right decision, nor should it, right, right? Yeah, um, but that is the sort of question that we wrestle with. AI can can can help me with various aspects of that decision, perhaps, in the much the same way that a skilled doctor can, uh, but it won't replace it. So I think having AI in the right context is really powerful. But but like so many technological solutions, um it's agnostic about the work that it does. It it does a task, um, and the task cannot be be human, I don't think.

SPEAKER_01 18:52

Yeah, yeah. Well, um, James, I really appreciate you taking the time to tell the story. Uh, just one more time, if people want to read the book, it's called, and yeah, go on.

SPEAKER_00 19:06

Yeah, it's called it's called More Than We Expected. It's funny, my goal is not really to sell books. Um I'm a strange I'm a strange author. I I have a book which because it allows me to have conversations like these. Yes. And one thing that I'll say to your audience is if you'd love to read the book, that's that's great. I encourage you to read the book. It's available at Amazon, all major retail, blah, blah, blah. Um, but what I'd really love is if you got in touch with me and we had a conversation about these sorts of things, because that's what's that that's success for me. So if you want to reach me, um, you can email me at james at more thanamemoir.com. And the website for the book is more than memoir.com. Um, and uh it's a real privilege to be here. Thank you so much.

SPEAKER_01 19:44

Uh again, um, your story is amazing, your message is profound. Uh, thank you for taking the time. Thanks so much.