Faith, Medicine, and Fatherhood: Where Terror and Wonder Meet, with James Robinson

Where do faith, terror, and wonder intersect? In this powerful episode, author James G. Robinson takes us on an extraordinary journey across continents as he fights to save his son's life, sharing the profound lessons he learned about faith, resilience, and finding wonder in life's most challenging moments.

From an unexpected prenatal diagnosis to a daring medical transport across the Pacific, James shares how his family found humanity in hospital kitchens, strength in unlikely allies, and profound wonder in life's most terrifying moments.

James Robinson is the author of More Than We Expected (morethanamemoir.com) a memoir of his five years parenting a remarkable child, an experience that opened his eyes to what it means to live, grow and heal. The book was inspired by his article “Road to Recovery”, which was featured on the front page of the Times’ Sunday Travel section in 2017. Describing a road trip his family took after the death of his son, the piece was selected as a notable essay in "The Best American Travel Writing 2018." 

You'll learn:

• How children teach us to see the world differently
• How a source of terror can also be a source of wonder
• How communicating with children honestly is the best gift you can offer
• Why and when to push the limits
• Where to find unexpected allies
• And so much more...

Learn more about James:
Website
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Music credit: Limitless by Bells

Transcript

Jessica Fein: Welcome. I'm Jessica Fein, and this is the “I Don’t Know How You Do It” podcast, where we talk to people whose lives seem unimaginable from the outside and dive into how they're able to do things that look undoable. I'm so glad you're joining me on this journey and I hope you enjoy the conversation. 

Welcome back to the show. Today, I have a few, I don't know, lighthearted questions for you. Things like, what does it mean to have faith? What does it mean to be human? How do you find meaning in life? These are just a few of the topics covered in today's episode.

Our guest, James Robinson, takes us on an extraordinary journey that begins with an unexpected prenatal diagnosis and leads us across continents through [00:01:00] moments of terror and wonder, and ultimately to profound revelations. Thanks When James's twin sons were born, one of them, Nadav, had a serious heart condition that would require multiple surgeries.

But it was a family vacation to Australia that would test their limits in ways they never imagined. What started as an attempt to live life fully, despite medical challenges, Turned into a three month fight for survival in a foreign hospital, followed by a daring medical transport across the Pacific that pushed the boundaries of what was possible.

James G. Robinson is the author of More Than We Expected, a memoir of his five years parenting Nadav, an experience that opened his eyes to what it means to live, grow, and heal, things we talk about in today's episode. His book was inspired by the article he wrote, “Road to Recovery,” which was featured on the front page of the Times Sunday travel section.

In this deeply moving conversation, James shares how his son's condition opened his eyes to everyday miracles, from the microscopic cilia that determine how [00:02:00] our organs form, to the power of hospital cafeteria chefs to bring joy to a sick child. It's a story about finding humanity in unexpected places, about the strength of children to face hard truths, and about learning to navigate the unknown with grace.

It is my honor to bring you James Robinson.

Welcome, James. I have been looking forward to this conversation since we met leading up to the Global Genes Conference. I loved being in the audience and hearing you share your story. 

James Robinson: Thanks, Jessica. It's great to be here. Me too. When I read your book, so much of what you wrote resonated. So much of your experience felt familiar and, uh, it's just such a pleasure to join you.

Jessica Fein: Thank you for saying that. And it's interesting. There are people who I've come to know now and read their books or had conversations where it is that like we just immediately get each other and so much of their experience resonates and there's a piece of me that's like, man, where were you when I was going through it?

You know, like that's when I really would have loved to have. known [00:03:00] people who could relate to what was going on. 

James Robinson: Yeah. It's funny when you invited me to be on your podcast and the name of it was, I don't know how you do it. I like, it was like an assignment. Like I had to think about how we actually did it so that I could share some insight with your listeners.

And the point that you bring up is, I mean, I think so much of what gets you through experiences like this are other people who are dealing with similar things you just connect with and they become your sources of strength when things are tough. 

Jessica Fein: And sometimes it's the people you never would have imagined.

So people are listening to this and like, what are you guys even talking about? So let's back it up and hear a little bit about your family. 

James Robinson: Sure. My wife and I have three sons. Our first child was born 17 years ago. So he's a teenager now, which I hear is an incurable condition.

Jessica Fein: I have one of those too.

James Robinson: Yeah. Any advice you have, I'm all ears. And then four years later, we had twin boys born. One of whom unfortunately had been diagnosed in utero with a very serious congenital heart defect, which was quite unexpected for us. And it was a condition that required, you Three surgeries by the age of four, [00:04:00] the first one coming at five days, the second one coming at five months.

And we knew from the moment he was born that things would be challenging, and there was no cure for what he had. His heart had a single ventricle, which meant that his red and blue blood were mixing in the heart. And that's not something the doctors could fix. So the hope was to get him to teenage years and possibly a heart transplant.

Jessica Fein: When we think about getting that diagnosis in utero, having all of those surgeries so early on, all of the multitude of emotions swirling around, and P. S., you also had another newborn. 

James Robinson: Yes, who was healthy. Thank God. 

Jessica Fein: Yes. Yes. But, you know, plenty of people are overwhelmed by one healthy newborn. 

James Robinson: I discovered the secret to dealing with twins is to have a friend who has triplets.

I had somebody at work who had triplets, and it made things so much easier whenever I thought things were getting difficult. I just love how life must be like for him. 

Jessica Fein: I love it. It is all relative. All right. Well, you know, one of the things that's interesting to me is you said that learning Nadav had a very serious heart condition, was a source of terror.[00:05:00] 

But it was also a source of wonder. Now, the former seems pretty self explanatory, but tell us about the wonder. 

James Robinson: Listen, anybody whose parent knows the wonder, right? When your child is born and you walk out of the hospital and you're just overcome, or at least I was, by this sense of the miracle of life and that we had brought this new being into the world.

And, and in a way that was. really amazing in a way it sort of sets you off, even with a healthy, healthy child from the rest of the world, because you sort of walk around and you're like, why isn't everybody else feeling this way? It feels a very special alone thing. And I have to say, having, having had a kid born with, with a heart defect, the sense of wonder is even more that maybe not immediately, but the fact that something went wrong in his development opened my eyes to the wonder of how anything ever goes right.

You know, we didn't know what had caused his condition when he was born. But we eventually sort of learned more and more about it as, as you know, our lives progressed. And one of the things I found was what had caused his condition was sort of like one of the earliest things that happens when the embryo [00:06:00] is first formed.

It's completely symmetrical. And there are these little cilia, like little hairs on the outside of the embryo. Like anybody who's looked under a microscope in 10th grade knows, you know, the amoebas, right? And the paramecium. It's the same sort of idea. And these cilia, and I learned about this from an article in the New York Times of all places, right, in the Science Times.

But these cilia beat the amniotic fluid around the embryo, and that determines how your organs will form, because that lays out the proteins that determine where your heart goes, where your liver goes, where your stomach goes, you know, which side of your lungs are, are which, right? And if those cilia are beating backwards, the organs are completely reversed.

That's something called cytosubversus. I think one in about every 10, 000 people have it. But if they're not beating quite right, the organs are malformed. And that's what our son had, Nadav. He had something called heterotaxy, which was most immediate, the most immediate concern was his heart. But there were other problems with his anatomy as well.

You know, none of them not life threatening. Like he didn't have a spleen. His liver was a little on the wrong side, right? Or whatever. But to that sense of wonder, You know, the [00:07:00] fact that this is how your organs form, that these tiny little hairs swirl the amniotic fluid in a way that lays out these proteins, and it happens over the span of three hours.

Right? Like dinner and a movie for all of us, right? I mean, the fact that this is how your body determines how it's going to form its organs is just so mind blowing. And I never would have considered that if I was not an advanced biologist, or a doctor, or a parent of a kid with a really weird anatomy.

And there were so many times in his life that that his condition opened our eyes to things that we ordinarily would not have encountered. And that was the privilege of being his father. 

Jessica Fein: Your perspective is forever altered. And as you point out, it's forever altered when you become a parent in the first place.

But what you learned about that you probably wouldn't have otherwise, and then could appreciate As you say, when things go right, and also your perspective of, okay, you know, we have twins. This guy over here has triplets. I mean, just, it seems like [00:08:00] everything shifts. And it just isn't going back. It's just shifting and shifting and shifting.

James Robinson: Yeah, I mean, people ask how we do it. And the fact of the matter is we have to, because it's our job. Like, I did not choose this, right? My wife and I did not choose this, but we were in this position. We had to do it, and we had to cope, and your mind copes in all sorts of weird ways, right? It looks for people who are Not worse off, but like you are in similar conditions and it makes you feel less alone, right?

Coincidences in weird places, like it transforms your sense of faith in really profound ways, right? 

Jessica Fein: Meanwhile, you're having to now become expert in things you never even heard of before. And so I know in your case, you developed a secret superpower, if you will. So tell us about that, because I bet Well, maybe some of our listeners also share that with you, knowing who's in our audience, but there are a lot of people who will be pretty surprised to hear about your special talent.

James Robinson: My secret talent. Yeah. So my secret talent, when our son, [00:09:00] when Nadav was in the hospital after his first surgery, recovering with only a collapsed lung, right? That's another way in which your mind sort of like, we knew that was something that was a possibility and that was terrifying for other people in our lives.

But for us, it was like, that was an outcome we knew was not risky. Like we knew that just took time to heal. We waited a very long time for him to be able to come home, but before we were able to bring him home, uh, I had to learn how to place something called an NG tube, a nasal gastric tube, because he is, circulation was so compromised that he couldn't grow as quickly as other kids, and he needed special attention to his feeding needs, and he actually needed his feeding to be supplemented.

Overnight, in addition to breastfeeding, uh, he had to have this, um, some milk pumped into his, sounds disgusting, into his stomach through this tube that goes through your nose. And that was disgusting enough for me, right? Because I'm squeamish about all sorts of bodily things. But even worse, we weren't allowed to go home without me being able to put the tube in.

Because apparently the tube comes out a lot. And once the tube comes out, you have to be able to put it back in. 

Jessica Fein: So just a pause for people listening who might not [00:10:00] have caught that. This is a tube. That goes up through your nose, right? That's the end. Nasal. 

James Robinson: It's yellow, yeah. It's like taxi cab yellow.

Up through your nose. Your nose, 

Jessica Fein: it has to go down and has to land in your stomach. 

James Robinson: Yes, because if you put it in the wrong way, it can land in your lungs. 

Jessica Fein: Exactly, that is no good. 

James Robinson: And that's very bad, right? so like, like, We have an infant who's not really enthusiastic about this, right?

Also, like he's, he's not in the mood to have this done to him. And that's what you got to do. And it seems like, it seems like every night he pulled it out, right? Like, cause he just sort of like toss and turns and pulls and yanks. And this machine would start beeping in the middle of the night, you know, alerting us to the fact that something was wrong.

And. And I had to do what the nurse practitioner taught us to do in the hospital, which was a whole routine, right? You've gotta, you know, lubricate it, you've gotta put it in a certain angle, you've gotta sort of feel your way through, right? Then you've gotta get out your stethoscope. There's like a, a wire inside that's, you know, that keeps it stiff through the whole process, you gotta pull that out.

And I got [00:11:00] so good at this, I got so good at this, that I could place her in a G tube in the middle of the night, with the lights out without him waking up. That tells you how often we had to do it. Right. But something that had totally terrified me, that I thought, there's no way I am doing this, suddenly became like, a skill that I had, and like everything else involved in this care, it becomes part of your identity, and brings a lot of meaning to your life, that you're able to do these things for your kids.

Jessica Fein: I can relate to this so much. We weren't allowed to leave the hospital when Dahlia was nine until my husband and I had each placed her trach tube in three times solo. Each one of us had to do that or they would not discharge her. Now, this is a life and death thing. You cannot lollygag while you're doing it.

This is her breathing mechanism. This is a tube that goes in and this is how she's going to breathe. And the idea that we had to do the, I mean, and again, you know, the same thing you're describing with the lubrication and the placement and then you pull out the thing. And anyway, the first time we had to do this at home, we were so [00:12:00] petrified.

We actually called a neighbor who was a nurse and said, you got to come. Like we, we, we cannot fast forward. I'll never forget. Rob, my husband is making dinner one night. He's cooking some like glorious chicken dish. And. We need to change Dahlia's trach tube. And he like, you know, puts the chicken meal on hold for a minute and is like one handed changing her trach tube.

And I thought, my God, our lives have changed. 

James Robinson: Yeah. Yeah. I can totally relate. Yeah. And, and for us, it wasn't quite as risky, but it was risky, right? If you put the NG tube in the lung. Oh, of course. And I only ever did that once and I learned not to do it again. And, and the other thing is that it gives you a certain sort of expertise because you have to deal with these medical professionals all the time.

And in many ways, you know as much as them about what your kid needs, right? Not just as a parent, but as a, as a medical caretaker. 

Jessica Fein: Well, you're very generous to say, you know, in many ways, you know, as much as them, because I would say in not an insignificant number of ways, you know, more than them. 

James Robinson: Yeah. I mean, they have a lot of medical training.

Right? Like, I wouldn't [00:13:00] want to do a surgeon's job, right? Like, I wouldn't want to do an echocardiogram. Like, I'm pretty hopeless at that, right? So, so you do have to form this partnership. But the best caretakers we thought from the medical side were people who sort of knew and appreciated respect to that and sought it out from us instead of just indulging us as we, as we worked with them.

Jessica Fein: Yeah. And I really appreciate you saying that. And I know that's a big theme that you talk about in your book is this partnership and the respect that they have for you as the parent and telling you you're going to be the parent. We're going to be the medical professionals, because sometimes when there's so much medicine and care involved, I think the parenting, the fun stuff, goes down on the list of priorities.

And I feel like when a doctor says that to you, that is a really important recognition of your role. 

James Robinson: In many cases, being a parent requires more effort than being a medical caretaker, right? To figure out how can you create a normal life for your kids in the face of all these challenges becomes in some cases like a logistical nightmare, in some cases kind of an emotional nightmare as [00:14:00] well, right?

And you have to be able to balance the medical needs with the parenting because you can't neglect the parenting. And the one thing that we always wanted to stress was we didn't want to deny any of our kids a quote unquote normal childhood. As a result of this unexpected swerve that had happened in our lives and for us, that took many forms, but that was something we actually had to be in very intentional about because I think the default instinct is to like bunker down.

Jessica Fein: Exactly. And let's go there because for you, one of the ways that you were going to have a quote unquote normal experience and you were going to do the things you would do otherwise is you decided to take a very different approach. Big trip, when many families would have been like, okay, you know, a little bit petrified even under the best of circumstances.

James Robinson: Well, we worked our way up to that trip, to be fair. Okay, so I would rephrase it a little bit. One of the things that was very important to us was traveling and movement. Like I always viewed our responsibility as parents was to show our kids as much of the world as possible. We do all these road trips all the time.

We drive down to the beach every year. You know, we, we sort of take these [00:15:00] crazy little road trips, but we kept pushing it. So we went down to the beach. It was beautiful. Like for them to swim in the water and you have the sort of vacations that I had when I was a kid playing in the sand. They loved it. We started going further afield.

We, we got an airplane and it was very important for us that we were able to do it. Remember this is with a kid who has had two surgeries. He's not an invalid, but he's definitely, you know, challenged. He doesn't have the same sort of stamina. There's always sort of the thing in the back of your mind. It's like, what if something goes wrong?

You know, you think like, where do I go? Right. After his third surgery, which happened just before he turned four, I got an offer to come do a speech in Australia, which is a very meaningful country for me and my wife. For me, because my mother is from there, my father's from New Zealand, so we have a lot of roots down there.

It's a very meaningful place. My wife lived there for four years. That's kind of how we met, but that's a different podcast. 

Jessica Fein: It's a good story. We might have to do that as a special bonus. 

James Robinson: Yeah. For your extra subscribers, we'll do a special bonus. The love story of how we met. Anyway, so I invited to speak in Australia.

They were gonna fly me down business class. I said, can you make it [00:16:00] economy tickets instead? And they said, sure, whatever it is, here's the budget. And so suddenly we had this opportunity to take our three kids down to this country we loved for the price of like one economy ticket. And this was like a very difficult decision.

'cause our son had just had his third surgery, right? So we went to the doctors and we said, you know, what do you think about him flying and dah, dah, dah? And we talked it over and we mulled it over and eventually we made the decision knowing what we knew at the time that that it would be okay to go. And we took them down and had an amazing time.

We had an eight year old and four year old twins and we did everything. We went to the Harbor Bridge. We went to the zoo. We saw koalas. We had all my family, right, all of his cousins. And it was fantastic. Until two days before we were supposed to leave, he was not looking too well. And we called up his doctor in New York, sent her a photo and said, what do you think?

And she said, well, I think you should take him to the hospital and get him checked out. And it turns out that he was admitted to the hospital because he had a clot in his circulation. which was not great. And very quickly it was determined that he needed emergency surgery to address this clot. And so suddenly we found ourselves in this hospital on the other side of the world in a city that I knew and loved, but a very [00:17:00] unfamiliar part of the city.

And I'd never been to this hospital. The doctors, we did not know them. They did not know us. We had built up all these relationships in the States with his doctors in New York and suddenly we're halfway around the world from them. And so that was quite a nerve wracking experience. 

Jessica Fein: And once you were there, it was not so easy to leave.

James Robinson: Well, I mean, honestly, we didn't know if he'd survive. Right? I mean, your cardiac has been diagnosed with a clot. They don't know how to address it. And we said, do you know what you're gonna do? So he said, no, I'm not quite sure. I have to know when I get in there. Right? I mean, she's not making it up as she goes along, but she knows the various scenarios until she's in there.

She can't really determine what's happening. This is one of the worst moments of our lives. Our son was admitted at 8 in the morning for this emergency surgery. We knew that it would take a while. You don't want a surgery to end early. So, even though by like 1 or 2 we hadn't heard anything, they gave us this pager, and they said don't come until you hear the pager beep.

And the pager didn't beep, and then it's 2, and then it's 3, and then it's 4, and, you know, we're getting a little worried, so we called them up, they're like, has the pager beeped? No. So, you gotta wait. And it turns out, the [00:18:00] pager did not beep until 10 o'clock at night. And that was just terrifying, right? And we came up, and the first words out of my mouth was, is he alive?

And the nurse said, yes, and you know, he's coming out now, but it was terrifying and nerve wracking. And even more so because he came out of this thing called ECMO, which is this heart lung machine, which is very good in the short term for keeping kids alive, but not very good in the longterm. And the longterm is like five days.

Right. So you kind of have to get off it as quickly as possible. So this was a situation that we had not expected. So when you say it's like difficult, this is about as difficult as it gets. At this point, we had no idea whether he'd lived through the night, much less, you know, you know, be able to return home.

That was the furthest thing from our minds. So we found ourselves kind of in this stranded situation, which was kind of nutty. 

Jessica Fein: So then what happens? You kind of set up home in Australia, and you still have your two other kids there with you. 

James Robinson: Yeah. I mean, we had to figure our way out of that box because he was in critical condition, and they couldn't take him off the ECMO machine.

It just wasn't working. We called his cardiologist in New York, who we were very close to, and she's Hindu. And she said, I'm, I'm praying for you. [00:19:00] And I said, like, who are you praying to? Which gods? I guess we're Jewish. I don't know anything about Hinduism or religion. And she said, all of them. It was like a full spectrum blast.

And I said, well, if you had to pick one, who would it be? And she said, Hanuman, who's like the monkey god. And I didn't know anything about Hanuman, so I googled him. And if you look at Hanuman, he's often depicted as like having his chest held open. There's like blood coming out. Which is weird, because our son was in the other room with his chest held open because the heart lung machine was plugged in, and I don't think that's why she said it, but we printed out the photo of Hanuman and we put it on the wall, and that night, they took a leap of faith, they pulled the cannulas out of the egg machine, and his heart just started pumping, and that was pretty crazy.

I don't believe in Hanuman now, but That's a point of connection between two people, even though our faiths are different, right? To have that connection of faith was really incredible. And I actually started asking other people, like, if you have any other people, you know, you worship, like, let's put them up.

Jessica Fein: Bring them in. Yes. I was in a similar situation when my mother in law was religious and I'm Jewish too, as you know, my mother in law was not Jewish and she was a very religious woman. And I actually was [00:20:00] like, so thankful that she was, um, praying for me that she was going to church praying for Dahlia, I should say, you know, and I was like, Okay, what other friends do we have in different religions?

I wanted to make sure we had all the bases covered. 

James Robinson: Yeah, because you know, right, we have this little angel that somebody given us like during his first surgery, like we don't believe in angels, but it was nice to have the angel there. He was still in very bad shape. And actually the following night when I was just ready to go home and have a beer or back to the apartment we're staying in the doctors called us in And had a family meeting, like a family meeting is not good, right?

Like it's you and your wife and then like everybody else involved in this care on the other side of the table. All the nurses, all the doctors, all the whatever. And the doctor in charge looked at us and said, I have news I have to share with you. Nadav's not doing well. He's got a high fever and his white blood cell count is high as well.

And there's three things that could happen tonight. I just want to make sure, you know, well, the story is okay. He said, okay, well, the first scenario is that he could get better and that's not going to happen. Like we know that's not going to happen tonight. The second scenario is that he could hold steady and that's what we're hoping [00:21:00] for.

And the third scenario is that he could deteriorate. And in that case, I have to tell you, there's nothing more we could do. And I had built up like this strength, inner strength or whatever, ability to cope with a lot of things. But that was like the final straw. I just lost it, not outwardly, but inwardly I was just shattered.

But my wife, who's incredible, looked the doctor straight in the eye and she said, so what you're saying is that it's up to him. The doctor looked at her and said, uh, yeah, I suppose that's right. And she said, well, I can live with that because I trust him. That more than anything else, completely redefined my idea of faith.

What she trusted was sort of the body's innate, ability to heal and grow and do whatever mystical thing it is that helps us become healthy and human. It goes back to that embryo with this, like, it is something profound that she, that she trusted in, right? In him. And he made it through that night. And although he did not improve, he held steady for quite a long time.

We were stuck there for three months with some pretty crazy challenges. He was not a candidate for [00:22:00] surgery. He wasn't improving. He was, sorry, it's disgusting for your listeners, but like he was draining fluids, which is one of the problems, these cardiac kids, right? We didn't know how to stop it. And we were basically like, just stuck.

Jessica Fein: Well, I love your wife. I, to be clear, have never met your wife, but everything I have read about her and heard about her. And I actually have shared the story with my own husband of how it is you ultimately got out of Australia because this was another kind of magical thing that she worked through. 

James Robinson: She wouldn't call it magical I don't think. She's an engineer. So these are engineering problems for her. But one of the things that makes her remarkable and Again, a thing that I would never do, and this is why you get married, right, is she reads medical journals. She does the research, right, into what's going on. And she found a paper written by an interventional cardiologist at the Children's Hospital of Philadelphia.

This is about two and a half months in. And remember, this is a kid who's not a candidate for surgery. There's no reason to bring him home. 

Jessica Fein: And just to pause there for listeners to understand. So obviously, in order to go home, you [00:23:00] would have had to have been on a special plane. And in order for that to be funded, there needed to be a reason for medical transport.

James Robinson: Yes, you need a reason. Right? And since he's not a candidate for surgery, there's no reason. And it's also a very risky thing, because he's in really bad shape and bad condition. So it's kind of a long shot. Until my wife finds this paper in which this interventional cardiologist describes a new procedure that he's developed along with his colleagues to revert the circulation in kids like our son without surgery.

And that's essentially what he needed, to revert the circulation to a more stable version. And my wife finds this paper, lightbulb goes on, she calls our cardiologist in New York and said, is he a candidate for this? And the cardiologist, because this is such a tight knit community, calls the other cardiologist and he says the magic words, he says, I'll evaluate him.

And suddenly, that gives us a medical justification. That's not enough. You have to have the logistics of this, right? Because this is a kid who's in critical condition. I mean, he's still intubated, right? He's still on a ventilator. So the doctors partner up and they come up with this crazy plan to take a specially [00:24:00] modified Gulfstream 3, equipped for medical transport, and fly it with an attending cardiologist, a couple of great nurses, a respiratory therapist, from Philadelphia to Oakland, to Oakland to Hawaii, Hawaii to Fiji, Fiji to Sydney.

And then, uh, Where they land in these blue jumpsuits with American flags on their sleeves and chop transport in the back. You know, these like astronauts, right? Who are there to bring our kid home. And they've planned out this flight where they're gonna take him Sydney to Fiji, Fiji, Hawaii, Hawaii, Oakland, Oakland, Philadelphia on the specially modified Gulfstream III.

Totally told us that this was not a sure thing. Like, there was a good chance something could go wrong. And if he died in flight, they were gonna land at the nearest airport. Like, this is not routine. This is actually, you know, As I heard it, the furthest that they had ever transported somebody this sick.

And this is a hospital, which is one of the main hospitals in the U. S. for cases like this. And they did it. They did it. They brought him home. Well, they brought him almost home because it's Philadelphia. And as any New Yorker will tell you, Philadelphia is not home, right? But it's close enough. It's a lot closer than Sydney.

And this is just another miracle where our son just like, because of [00:25:00] people who have dedicated their lives to helping kids in these situations that I'm eternally grateful for, we'd make it back to the United States and suddenly have the chance to hope for improvement. rather than just stability, because they do the procedure the next morning and it's a success.

And it's not a cure for anything, right? It just buys them more time to get better. And we're still stranded. You know, we're now in Philadelphia, which is two hours away, but it's still not home. So better, but not quite there yet. Because we were there for six months, 

Jessica Fein: Six months. Okay. So I just want to be clear about this.

You were in Australia for three months, and then you get back to Philadelphia to chop, which is home adjacent. And you are there for six months. And you push the limits when you were there, because I mean, come on, let's just face it. It's a lot of sitting around and waiting around when you're in the hospital for an extended stay.

I mean, I was only there for three months. So, back to your thing that you said earlier about everything being relative. Yeah. I thought three months was a lot, but I look at you and I'm like, oh, that was a breeze. So tell us about some of the ways that you pushed the limits when you were in [00:26:00] that extended stay.

James Robinson: Yeah. I mean, the thing about Philadelphia is it wasn't like, the danger was not as acute as it was in Sydney. In Sydney, he was clinging to life. In Philadelphia, we just had to figure out how to, like, clear out his lungs, and they wouldn't clear. Like, it was just really frustrating, and there was a lot of, not killing time, but Excitement was a different sort of excitement, let's put it that way.

And we had to sort of, again, figure out how to give our kids quite a normal life in these weird circumstances. So, one of the things we had learned in Australia, And this was a remarkable thing the doctor did for us when he was sort of critically ill. Was they insisted that they bring him outside? Which is insane for a kid who is like, intubated, clinging to life, that you would actually think of taking his bed and bringing it out into the courtyard, and the playground, so he can watch his brothers play, and feel the fresh air, and touch flowers.

Like, I mean, the utterly remarkable. I can't imagine that anybody would do that in the States. I don't think, if only for legal reasons, but they did that in Australia. And it wasn't out of pity, and it wasn't out of like palliative care. It was just like, this kid needs to heal again, back to the healing, right?

Our job is not to heal him, our job is to put him in the best opportunity, give him the best opportunity to heal himself. And to do that, [00:27:00] the more normal it is, the better, right? And nature's, can heal maybe, I don't know. So we tried to do the same thing in Philadelphia, we took him outside every chance we could get.

We just started wandering around the hospital, we discovered all these little nooks and crannies. We got to be really good friends with the security guards. I actually think security guards are really important people to know. And they let us go to, like, crazy places. We insisted on having therapy sessions outside.

We had meals outside. One day I was like, I'm sure he would love to be back in the car because we have this car that we've had for ages. And so I brought him down and I put him in the car and he sat in the car and he sort of had a smile on his face and he got to sit in his car. And then a couple of weeks later, when his brother's visiting, I was like, let's go down and look at the car.

And so we all get in the car and I'm like, let's just go for a ride. 

Jessica Fein: It's like you broke out of the hospital. 

James Robinson: We did. This was completely. I don't know. Illegal? Is this, I don't know. Against the rules? Whatever. It didn't matter. We just took him for a ride. Like, I want to give this kid a normal life, right? I want him to see Philadelphia.

So we drove around and saw Philadelphia and then came back as if nothing had happened. And I think people thought we were a little strange because the doctors would come by and they're like, where are [00:28:00] you? They're like, well, we're not doing anything sitting around, you know, in the bed. Why not get out there?

Jessica Fein: You know, one of the things that I love is how much you appreciate not only the whole host of medical professionals who are partnering with you in so many different ways, but also the other people who were part of that hospital ecosystem. So whether it's the security guards or in your case, also the people who worked in the hospital cafeteria.

James Robinson: Yeah. So there are all these sorts of people who work in a hospital. Child life is so important and is so underfunded because they bring humanity in the hospital. They allow kids to be, they're not just distracting the kids, they're caring for them. Our child life person kind of ran out of things to do because we were there for so long.

And one day she was like, is there anything in the hospital that we haven't done? And we sort of like made a mental map of the hospital and he developed this like strange taste for like strong flavors, especially like oregano, this herb oregano, which we had found in this little garden. And so we're like, well, what about the kitchen?

And so she's like, yeah, maybe I could set that up. So, one morning, we get up, and we go, like, the elevator, you always [00:29:00] go up, we went down in the elevator, and it takes us to the industrial kitchens underneath CHOP, where we meet the head chef, who is a wonderful woman, and her team of cooks, and whatever, and these giant stand mixers, and walk in refrigerators, and huge walls of herbs and spices, and it was just a fascinating place for us, too.

And you know, eating was very important, because he developed these weird tastes, and he was a very picky eater. I mean, this is a kid who asked for sushi as his first meal after his extubate. Gotta respect that. Right? So, I don't know. Whatever. He's got specific tastes. And my wife starts talking to the, uh, head chef, just like, you know, what sort of food options, because the chef said, what does he like to eat?

And my wife's like, oh, he likes lamb. And she said, oh, we have this whole halal menu full of lamb. We can make lamb. And Tom's like, oh, what do you have? And she said, well, what does he want? And she said, I don't know, lamb chops? And she said, tonight you'll have lamb chops. So we go into the room, and sure enough, that night, lamb chops magically appear, and the Send her a message and it's like, lamb burgers, and Again, like, what was remarkable about [00:30:00] it was not that she made the extra effort.

It's that everybody involved in the care really cares. And they're all important. And you don't think about the people who prepare the food concerning the basement, and it just magically appears under a piece of plastic. But there are people who make the food, and believe it or not, they care about nutrition and making sure kids are healthy.

And for her, it was really gratifying to see a patient. She doesn't see patients. There's all this humanity in the hospital, at least the ones we were in. If you know where to look, and if you appreciate that other people are human beings who are doing their best to do their jobs, which is ultimately in a hospital setting to care for kids like our son, I think if you appreciate as a parent, it really makes things that much easier to know that you are supported in all these unexpected places by people who are really caring and fundamentally caring.

Jessica Fein: And one of the things that you write about is how our children have a special ability to reveal the goodness in the world. And it strikes me as you're telling this story that that was one example. 

James Robinson: All of our kids in their own way have done that. I was one of the greatest gifts as a parent, and it's not always obvious when it happens.

[00:31:00] Sometimes you have to look back on an experience and say, Oh, okay, that was actually important for me to learn. 

Jessica Fein: So you go home after six months, you now have been away from being together as a family in your own home for almost a year. 

James Robinson: Mm hmm. 

Jessica Fein: What was that like? 

James Robinson: The boys were actually away when we brought him home.

They were with my parents on a little mini vacation. So when we brought him home, it was just him and that was a pretty special experience. But all that we've been through for him just to be home, you know, see his own bed, see his own toys, that was pretty, pretty cool. And, you know, the next day our house starts filling up with medical equipment, because that's what happens, right?

And then the boys come back, and then you have to, like, be normal again, like, as much as possible. Now, I have to tell your listeners, like, the prognosis here is, it's not like he's cured. Okay, so we know that, that things are still very dire for him. His circulation is all screwed up. In fact, the reason he was able to leave hospital in Philadelphia was in part because, in cardiac kids, these little extra veins grow called collateral veins.

And so the body is basically regrowing its circulation to compensate [00:32:00] for all the things that are on, which is another mind blowing thing, right? The fact that a lot of this is in large part because of the circulation that he made himself to compensate was, was kind of crazy, but it was inefficient and it was not sustainable.

So we, we were not out of the woods. But we still tried to make things normal. My wife, again, incredible, decides that Nadav is going to go to kindergarten at this public school across the street from our house. It's a kid who's come back. He's traveled the world in critical condition. He's not in great shape.

He's on extra oxygen. So he's got this oxygen tank when we go out and he's got this nasal cannulas. And we show up at this kindergarten meeting, because the school, by law, New York City schools have to accommodate you, no matter what. And all these people are thinking about this kid, what are we going to do?

Especially the nurse, the poor nurse, school nurse, is like looking forward to a year of skinned knees and she's end of the world champion cardiac kid. So it gets a little tense in the meeting. They mean well, but, but there's all these things that have to be worked out. And it gets a little tense at one point.

And the teacher who hadn't spoken to that point looks us right in the eye. And she says, Don't worry, [00:33:00] we're human. And I was like, okay, that's all I need to hear. 

Jessica Fein: Talk about the heroes along the way.

James Robinson: You know what she did? She knew how strong kids are. You mentioned that earlier. And she says, bring him in the second day, don't bring him in the first day.

Not because she thinks that he'll freak the kids out, but she wants to prepare them. And she prepares them by telling them the truth, which is so important. Okay. 

Jessica Fein: So important. Often not the immediate go to. 

James Robinson: But this is why she knows that kids can handle it. When a parent or an adult looks at a kid with a nasal cannula, they freak out.

They cannot look past it. This kid is on oxygen, like, this is the worst thing in the world, and they'll never get over it. Unless they're a special sort of person who's been through it before. That will always be a distraction to them. But a kid, if you say, okay, we have a new kid in our class named Nadav, and he has this thing in his nose because he needs extra oxygen, and he needs it to live, kids will be like, great, he gets his oxygen.

Cool, let's play! Yeah, like, that's, that's a good thing, right? That helps him. So I'm not going to focus on that. And the kids were like that, right? She did that [00:34:00] because she knew how strong they were, and the kids were like that. They welcomed him in as part of the class, not as like a special kid or we have to be extra nice to him, but because he's a good kid and very strong personality, right?

And he goes to kindergarten every day. We thought he'd maybe go a day a week or like half a day. He went every day, and he was so proud of himself. It was great. It's the best thing we could have done. 

Jessica Fein: In what other ways did Nadav teach you to see the world differently? Because that is another thing that you talk about as one of the profound outcomes of being Nadav's dad.

James Robinson: It put us face to face with the unknown in a way that was both terrifying and amazing. It forced me to consider the limits of what we know in a very real intangible way and be at peace with it. You know, one of the big decisions that we made while he was alive was that we went to Australia. A decision that my wife completely regrets.

She thinks it was the dumbest thing we could have done. I don't regret that. I think we made the best decision we could at the time. And I don't know if it was the right decision. I honestly don't. But we're human, I'll never know [00:35:00] that. If I knew that, I'd go crazy. What makes us human is that there's a limit to what we can know.

And that is both terrifying and wonderful. And so there's a very real way in which he taught me what it means to be human in a very amazing and devastating way. But I wouldn't change any of it, even knowing what I know now. That was his life. That was the life he was given. I mean, we're sort of skipping ahead now, but he died that January after we got back from Philadelphia.

That was something I'd always feared. And I'd feared it not just because I feared him dying. I feared it because I couldn't imagine how I would tell his brothers that he had died. That was the thing I feared most from the moment he was born. That as a father, that would be my obligation to do that. You And by the time he actually died, I had learned to do it.

And the reason I had learned to do it was, I didn't have to explain it to them. Because as a parent, you feel like it's an obligation to explain things. And this was something I could not explain. And so I told them the truth as best I knew it. And I didn't try to explain it because I can't. And people talk about like, oh, you know, like, how do you find meaning in death?

I don't know how you find meaning in life, like the whole thing is baffling, right? [00:36:00] You know, and being able to accept there are things beyond my comprehension. It's a very humbling thing, but it's also, I think, a real gift to have to come to terms with that. 

Jessica Fein: Your identity changed so much, A, when you became a dad, but when you became Nadav's dad.

And you became somebody who was, as a major part of your identity, caring for a complicated child. And that was a source of pride, and that gave you a sense of belonging. And when our kids die, in a sense, that goes away. But I know that you and I have spoken, and one of the things that has happened from the book that you have written and the conversations it's allowed you to have is it's brought back a little bit of that identity.

James Robinson: I wouldn't phrase it in a sense it goes away. I would say it's like ripped out of you. Like one minute you're in the Facebook group for, you know, CHD kids and the next moment you're in the grieving parents group, right? I mean, like, in our experience, that's like kind of a black and white thing. And that's, that's really tough.

Not to say there's not good [00:37:00] things about being around communities of grief, but everybody grieves in their own way. And those things are a little more idiosyncratic, I think. But yes, it's a very lonely place to be. One of the nicest things that happened to me after he died. And this is where I think our Jewish traditions became very meaningful, not as like any spiritual thing, but as really practical advice for dealing with grief.

Like everything in the Jewish tradition has a spiritual explanation, but if you look at it, it's like really good advice. You know, like bring the person food. Okay, that's smart. You're hungry and you don't want to cook or bury the body as quickly as possible. That's just really good advice. You can't choose a fancy casket.

Really good advice. You don't have to make those decisions. But one of the nice things about it was you have to say the mourner's kaddish three times a day for a certain period of time, but you have to do it with other people around. And that was really meaningful. When I went back to work, Actually, they sent an announcement around the whole company that he had died, which I was very grateful for in retrospect.

I wouldn't have known that, the fact that they did that, because there was no awkwardness about going back. Everybody knew I didn't have to be the person who told people, which took a lot of burden off my [00:38:00] shoulders. But the other thing that happened was, because he has a Jewish name, people were like, do you have somebody to say Kaddish with?

And my coworkers, actually, a bunch of my Jewish coworkers, who I did not know, said, we're going to arrange a minion, like a group of 10 people for you every day, so you can do it at work. And we work in the garment district, which is probably the most Jewish. 

Jessica Fein: I'm just going to say, you know, we're talking to you. You're in New York. So you had that going for you. 

James Robinson: I'm like, I'm going to go to this congregation down the road. And they're like, okay, in that case, we're going to make sure you don't go alone. So every day at lunchtime, I would meet somebody, some stranger in the lobby, he would walk me over and I would tell them the story I just told you.

And they would have tears in their eyes, and I would be comforting them by the end. It's funny. Right. Yeah. Right. And I began to realize that the story allowed me to connect with people in a way that you were alluding to, that you know, this emptiness, it could address the emptiness. And so that convinced me to like write it down and put it on paper.

Jessica Fein: Well, I'm so glad you did. So somebody comes to you and says, I just got this diagnosis. I don't think I can do it. I don't know how to do this. What three pieces of advice do you give? 

James Robinson: I think it's important to [00:39:00] find other people who you connect with. And sometimes that happens organically, just in the, in this journey.

You just know who they are. You just realize, and you stay in touch, and you're just there for each other. Sometimes the hospital sets it up. We were actually introduced to another family in a similar situation by our hospital and through this program they have, and I thought that was a really great gift.

So I think having other people around to get it is super important. I think trying to get smart about as much as possible, so you can speak fluently about what's going on, without going crazy, because you'll read a lot of stuff, which will make you crazy. But if it's sort of solutions oriented, or just like, I'm just gonna learn about this, that's, that's kinda good.

I also think that just realizing that it is possible to have, if not a normal life, that kids have a certain strength and resilience that often exceeds that of adults. And if you give them permission to be kids, they'll be able to cope with things. You don't have to use euphemisms. You don't have to, like, baby talk it.

You don't have to be awkward about it sometimes. And if you are, you can be honest about that with them and they'll understand. But trying to dumb it [00:40:00] down or make it easier or tell half truths, I don't think that's good. I don't know. I would hope that any parent would have a relationship with their kids where they feel that connection and ability to say, you know what, there's things I don't understand.

They're terrible. And yeah, they're scary sometimes, but we're here together and we'll do our best to get through it together. And I hope you talk to me with the same honesty that I talk to you because maybe someday you'll figure it out. That'll help. 

Jessica Fein: James, thank you. Thank you for your honesty. 

James Robinson: Thanks so much.

I just want to add one thing about the book and I'm, you know, obviously there's a book for sale that I've written a memoir that was published last year, but it's brought me great pleasure to have the book in existence because I've found that our story helps people who are not only caring for kids as parents, but also caring for kids and medical professionals.

And one of my hopes is that our story helps them. So if I could ask one thing of your listenership, if you know of anybody who cares for kids in similar situations, and you think that this story might help them to, to consider, you know, sending them this podcast or, or send them a copy of the book, I'd appreciate it.

Uh, not just because I want to make money, but because I don't from this book, but because it is incredibly gratifying having left this [00:41:00] world behind to know that our son's life still has impact and meaning moving forward. And that's very gratifying. 

Jessica Fein: Absolutely. I will, of course, have all of the links to how to get the book and how to connect with James in the show notes.

So please check that out because I do know that people are going to want to read the book and I love the idea of get one for yourself and get one for somebody, you know, who could use it. 

James Robinson: Thanks, Jessica. 

Jessica Fein: Here are my takeaways from the conversation with James. Number one, a source of terror can also be a source of wonder.

Number two, we don't need to know all the answers. Accepting the limits of what we can know and control is part of being human. Number three, don't underestimate children's capacity to handle difficult truths. You can be honest with them without having to explain everything. Sometimes acknowledging that you don't understand either is the most powerful response.

Number four, look for humanity in unexpected places. Whether it's a security guard, a cafeteria chef, or a school nurse, you will find people eager to help if [00:42:00] you approach them as partners. Number five, don't let fear of what could go wrong keep you from living. While being mindful, You can still always find ways to create moments of normalcy and joy.

Number six, remember that helping others understand your story can be healing. By sharing your experience, you not only process your own journey, but potentially provide guidance and comfort to others. And number seven, your faith can show up in surprising ways. Not just religious faith, But faith in doctors and strangers and your child's resilience and in your own strength as a parent.

Thank you so much for listening today. I am excited for a year ahead of amazing episodes. So if you are not already subscribed, make sure to do so. And if you could take a minute to rate and review the show, I'd be so grateful. Have a great day. Talk to you next time.