Trusting medicine in an age of doubt

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I literally feel like I'm a different person. Yes! Do you feel that way? Ideas worth spreading. From TED and NPR. I'm Manoush Zomorodi. In the summer of 2018, Kizmikiya Corbett had just gotten a great job offer. She was living in Washington, D.C., and up for anything.

I was having fun. I was living this single life in D.C., which is amazing for that. And I kind of came into that summer saying, I'm just going to take on new experiences.

One night, she went on a first date. The guy was attractive. They ordered tacos and beer. Then more tacos and beer.

He was fun. Why not?

As the night went on, they talked about their families, whether or not they wanted kids. And then Kizmikiya asked her go-to question: Do you plan on vaccinating your future children?

And this is gonna sound maybe not the best, but the reason why I always ask that question especially with guys that I was maybe interested in having a future with, is that it helped me to weed out what I would have then considered to be just not smart.

That may seem kind of harsh, but Kizmikia at the time was an up-and-coming immunologist dedicating her life to developing new vaccines. So his response was important.

He said something to the tune of, "Yes, I plan to vaccinate my kids." except for flu. And essentially, he said when he gets the flu vaccine, he gets sick, which is a bundle of a lot of things. The idea that a vaccine could make you sick, just because you get the vaccine, you should not get sick at all. There is misinformation in there, right? So I was shocked. Mm-hmm. I'm sitting across a man who I consider to be much smarter than me. He has his PhD in educational psychology, so he studied children and all of these things. Fascinating. It's like, wow, he thinks this. That was kind of like, ding, ding, ding, ding, ding.

Uh-huh. Oh my goodness.

We have a major problem here.

I guess he didn't realize that he was sitting across the table from a woman who had just invented a novel flu vaccine that was then slated for clinical trial.

Kizzmekia Corbett picks up from the TED stage.

At the same time, I was a research fellow at the National Institutes of Health Vaccine Research Center. And so normally that answer would have sent me packing on to my next first date, but I like this guy. And so I stayed and I answered a few questions after getting another beer. I told him that yes, the flu vaccine does have viruses in it, but those viruses are not alive, and so they technically cannot make you sick. "Sure, you may feel a little groggy after getting the shot, but that's just a sign that your immune system is working." And I asked him a simple question: Did he know that there are 200 or more viruses that can cause flu-like symptoms or the common cold? Surprisingly, he was not offended, and he asked me out on a second date. And I got more than a second date. Out of this guy, I got my first understanding of what I now like to call vaccine inquisitiveness. It wasn't that he was just reluctant to get hisself vaccines or to get his future children vaccinated. It was that he had questions, concerns, misinformation buried deep down for which he needed an expert like myself to answer without scorn and without judgment. So you—

it's interesting to me because there's this key moment where you slowed down and you took the time to sort of talk it out with him and be patient. And is that what sort of made you realize, like, "Okay, my job is not only research, but it's communicating around the incredible research I do"?

I always considered my job to be communication. I remember actually hearing an ad in DC, very clearly a radio station that mostly Black people would listen to. And I remember the ad was about joining HIV clinical trials from my center. But the voice was one that most Black people wouldn't resonate with.

I believe it was this high-pitched, like, super, like, please join this trial.

Go ahead, say it. A really white voice.

I remember telling my boss at the time that there's no way that anyone would join the clinical trial after listening to that ad. So I always knew that communication was a part of it. What I didn't necessarily realize before that moment was that listening was the biggest part. Mm-hmm. Mm-hmm. Everyone has their own story. Everyone has their own reasons for not being vaccinated or getting vaccinated. And most of what I did during that time was just hear someone out that I would normally write off. That was the most important thing that I did. It wasn't what I said, it was what I did around listening.

There is a lot of confusion around science and medicine right now. On the one hand, we hear that AI and gene editing may eventually eradicate all disease. On the other hand, misinformation breeds mistrust in the scientists doing this research, sometimes for understandable reasons. So today on the show, two stories about what medicine can and can't achieve, and ideas about staying connected to our humanity in our high-tech era. Later, you'll hear a father's story about accepting the limitations of science for his son. But first, back to Kizmekia Corbett. A year and a half after that first date, she was still seeing that guy and working on creating vaccines for when a pandemic might hit. And then it did. Hundreds in China has now reached the United States.

It is a pandemic at this point.

Let's talk about what that means.—

the criteria of a pandemic. In January of 2020, that virus that was circulating was deemed to be a coronavirus. This was a moment that me and my team had prepared for. We joined forces with Moderna, and we promised ourselves that we were going to get in a Phase 1 clinical trial in only 100 days. A purely scientific goal, by the way, but as I look back and I write this speech, I think there was probably a little bit of ego attached to it too. But that's okay because we did it. I mean, after countless hours in the lab, that vaccine, mRNA-1273, or what you now know to be called Spikevax, went into a Phase 1 clinical trial in only 66 days, a world record. Record. Now, at the end of the year, that vaccine was determined to be 94% effective against severe disease. But what was the gut punch for me was that 20% of people said that they were not going to take that vaccine. 20% of people were what the WHO would call vaccine hesitant. Now, vaccine hesitancy is not new. Even prior to the pandemic, vaccine hesitancy was deemed to be one of top 10 global health threats. And the truth of the matter is that vaccinologists like myself had long ignored this population of people who just were not going to take vaccines for one reason or the other. We were too busy publishing our data in world-renowned journals, kind of talking to ourselves.

What I appreciated was that in your talk, you showed a little bit of regret that you were so focused, so intent on creating this vaccine to deal with the coronavirus in record time that maybe you forgot some of these things because you were a little bit in the scientific bubble?

I am currently in the scientific bubble because that's how I've been trained. I've been trained since I was 19 to think about science strictly for the purpose of science. Mm-hmm. There was at one point, you know, I mean, there were— Tens of thousands of people dying a day. There is no— I mean, we should have gone faster, frankly. Mm-hmm. What happened was a series of very miraculous scientific feats that led to really good vaccines in a very short period of time. So I will not ever regret that. But what I will always regret is that we didn't take our time helping people to understand what was happening in real time. There was one moment where I said, "Oh yeah, the vaccines are protecting against transmission." Absolutely true in that moment. Absolutely. This is when the masks started coming off. It was like one of the first nights where I— on a Friday, I almost remember like shutting my computer down and saying, "I don't need to work this weekend.

I'm good." Like, we did what we—

we did what we came to do. Amazing. So scientifically, a very key moment in the pandemic, but a moment. Not explaining that it was a moment was a communication failure.

What I should have said is that over time, as the virus mutates, the vaccine may not be as good at covering transmission. And then we should have taken just a little bit more care and tenderness to talk to people about the possibility of vaccine injury. Even if vaccine injury didn't turn up in our clinical trials, there was always this possibility, and those types of stats didn't matter to someone who was reading headlines about vaccine injury and deciding whether they were gonna get themselves or their loved ones vaccinated. One of the major concerns was that we were moving too fast. There was so much research that was done prior to the pandemic. People studied coronavirus's basic biology. The Nobel laureates studied how to make mRNA feasible to deliver medicines into the body. We even did our thing too. All of that research pushed the coronavirus vaccine out quicker, safer, and more effective. All of that withstanding, some people still had questions that needed to be answered. They were unconvinced, and it was our job as scientists to make them convinced, except that failed communication lingered on. And I'm afraid that maybe some of that failed communication is the reason why today we have a rise in vaccine refusal. Kindergartners are showing up to kindergarten without their full vaccine regimens. Measles is on the rise in many communities. And measles, by the way, is a vaccine-preventable disease. And for me, that's really unfortunate because I know that there are 23 viral families that have the potential to infect humans. So it's not a question of whether there will be another pandemic, it's a matter of when.

In a minute, vaccine researcher Kizzmekia Corbett on how she now talks to people who distrust vaccines, the phrase she came up with that she thinks can crack open the conversation. Today on the show, honest conversations about what medicine can and can't achieve. I'm Manoush Zomorodi, and you're listening to the TED Radio Hour from NPR. Stay with us.

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Hey there. If you are loving this show, then I have a favor to ask of you. Would you mind giving us a review wherever you you listen, like this one from Claire, who says, "TED Radio Hour is a great way to gain knowledge and insights from the brightest minds on the planet. This is my go-to podcast when I'm road tripping or between true crime binges." Thank you, Claire. Please consider leaving a rating or a review of your own. It helps more people find us. Okay, back to the show. It's the TED Radio Hour from NPR. I'm Manoush Zomorodi. Today on the show, how we can talk more frankly about what medical innovations can and can't achieve. We were just hearing from vaccine researcher Kizzmekia Corbett, who is now at the Harvard T.H. Chan School of Public Health. During the pandemic, she served as scientific lead on the Moderna COVID vaccine, which was developed in a world record 66 days. It is credited with saving millions of lives, but millions of people also refused to take the vaccine. Which was incredibly frustrating for Kizmickia and her team. In 2021, she went on TV for an interview and tried to offer an olive branch to skeptics.

Doctor, thank you so much. I'm saying thank you because—

I was on ABC Good Morning America. Thank you for getting vaccinated. In 2021. So this is around the time that it started to be known that COVID vaccines were safe for children.

Vaccines and getting the vaccines, that was a big push of yours. Is it getting better, that hesitancy going away a little bit?

He said to me, you know, so what do you think about, are people just vaccine hesitant or— and I said no, people aren't vaccine hesitant, many people are vaccine inquisitive. Vaccine inquisitive.

And you know what, it is getting better. People have questions But they are seeking the answers in the right place. And we are seeing high turnover.

I never said that before. That had been a seed, but I never put language to it. Mm-hmm. Mm-hmm. And to some, it might feel ridiculous. We no longer say homeless person, but we say unhoused. For people who might have mental illness, different levels of mental capacities or learning abilities, we say neurodivergent. Those types of things change the way that people view themselves, but it also changes the way that we view them. Hmm. It's so easy to say, "I won't take the vaccine." It's a few words. It's a tweet. But there is a reason behind that. Sometimes it's a hard no, and that's fine. But there are very few people who are like that. Hmm. Most people exist in the gray area. And I'd say 95% of that gray area is question marks.

To me, the word inquisitive is very warm and inviting. It's saying you are an interested person, you are a curious person, you are a person who likes to learn, instead of saying you are cautious and making choices out of fear. Oh, yeah.

I mean, I use that phrase to humanize the idea that it is okay to have questions and concerns around anything medically that could be happening to you. But in my case, particularly vaccines.

Vaccine technology is going to go on and on and on. But I like to believe that vaccine hesitancy does not have to go on with it. If researchers would just open their minds to vaccine inquisitiveness in the same way that we open our mind to scientific inquisitiveness. If community and science were to meet— and that's not really that revolutionary. We already know that when community and science meet, science advances faster. Vaccine refusal turns into vaccine acceptance. Actually, When vaccine inquisitive meets a scientist on a date, it turns into a marriage. And you know one thing about this is that my husband still has questions every single time we take our children to get their vaccines. And I still have to find the answers, not just as a scientist, but now as a mother. Because I'm concerned about my children's safety and my children's lives depend on it.

So let's say someone is a vaccine skeptic or is vaccine inquisitive, as you would say. What do they need to know about, say, this next pandemic that might be on the rise? Because we hear— we're hearing a lot of things. We're hearing hantavirus and Ebola. And then we're also hearing an administration and statehouses that are trying to rollback science funding and are anti-vaccine, what should someone be thinking about?

What I want to come out of this conversation is that outbreaks are going to happen because that is what viruses do to survive. And all of us should be thinking about how we can keep the lines of communication open. Hmm. The idea that we only talk about viruses and vaccines and all of this when the moment and the outbreak outbreak is happening, it helps to actually increase the skepticism because like, where did this come from? Uh-huh. I think about that. If I were to put myself in someone else's shoes, oh my gosh, a new virus, a new type of vaccine. These people say they're going to have it out to me by the end of the year in record speed. No one's ever done this before. Why wouldn't I be skeptical of that? And so I think we have a lot of work to do around keeping the lines of communication open.

Mm. So let me ask you, what are you working on right now?

Tell us about it. I'm making vaccines in the form of nanoparticles. One of the things that we do that's really cool is we create very small linkers. So just protein sequences that can link different viral proteins to those nanoparticles. And so we can put many different viral proteins on the surface of nanoparticles, give them as a vaccine, and then hypothetically protect against many viruses at the same time. Oh. And many people have done that, but the secret sauce in my lab is using those very small linkers to drive the immune response in the direction that we want. So we can target the protein in the right direction to get the best type of immune response that we would want.

That's exciting. I am a vaccine believer, but I've realized I am also vaccine inquisitive in that I want to learn more. And so there, there's a meeting point right there, right? We can all be inquisitive.

We can all— even myself. Hmm. The truth of the matter is that curiosity and science exist right here as I look out of the window? Why are the leaves blowing in this direction and not the other? The sun shining here versus somewhere else? You'd be surprised how many little small questions you have throughout the day simply have— do not have answers or theories behind them yet. So at any point, you become a scientist. And inviting that type of curiosity From the community into science, particularly into vaccine development and understanding, can only make what we do better.

That was Kizzmekia Corbett. She is a viral immunologist and now a professor at Harvard's T.H. Chan School of Public Health, and also married to the man she had that date with. With two children. You can see her full talk at TED.com. Today on the show, what medical treatments can achieve, and being honest about what they cannot. As Kizmicki pointed out, there are still so many mysteries about how the world and the human body work, and accepting, even embracing those mysteries is at the heart of our next story.

There are wonders all around us. And the mystery of what it means to live and why all this happens is both terrifying and wonderful. And I think there is wonder and joy to be found even in the most difficult situations. This is James Robinson.

I have known James ever since our boys were in kindergarten together. After we first met, I quickly learned that he and his wife, Thali, also had toddler twins, and that one of those twins, a boy named Nadav, Nadav was very sick. Hi, my name is James.

I live in Brooklyn, New York, with my wife Tali, and I'm a dad.

This past year, James Robinson told Nadav's story on the TED stage.

And when people hear that, they always ask me the same question: How many kids do you have? Well, the answer is 3. 3 amazing boys. And then they say, "How old are they?" And that's where things get a little complicated. Because one of them, Nadav, was born with a heart defect and died 9 years ago at the age of 5. When I tell people this, they always have the same reaction: "That's the worst thing I could ever imagine." In fact, some of you are probably feeling that right now. But they don't realize what a privilege it was to be his father and how grateful I am for having had that experience. And today, I'm going to explain why.

When he was born, they told us that his heart had not formed correctly, that it would require 3 surgeries before the age of 4, the first at only 5 days old, that these surgeries would not cure his underlying condition, that there was no fixing his heart, and that the goal was to get him to teenage years where he might be eligible for a heart transplant.

And how did you and your family cope during those first years?

We coped as best we could. What was important to us was to have as much information as possible. The irony of the situation was that we quickly learned that there was a lot of ambiguity in medicine, that even though the doctors were extraordinary, there were still limits to what they could know, and that what we had to do was find a way to collaborate with them on caring for our son, both medically and as his parents.

Let me tell you what it is like to get that news. It is absolutely terrifying because it makes you realize how little you know. I didn't know whether these operations would be a success. I didn't know whether Nadav would live or die. And worst of all, if he did die, I didn't know how I would tell his brothers. Parenting is all about making choices. We wrestle with the unknown as best we can, hoping that things will work out for the best. We hope that the decisions we make are the right ones, and when things go wrong, we worry that there are no right decisions at all. We simply do not know. But there is also wonder to be found in the unknown. When we are first conceived, on the outside of the embryo are tiny hairs called cilia. Their job is to beat the amniotic fluid around the embryo This lays out the proteins that tell our organs how to form. If the cilia are not working quite right, and this is what happened with Nadav, the flow is erratic. The proteins are in the wrong position, and our organs are malformed. This happens in the span of 3 hours. In time for dinner and a movie, your fate is sealed. It absolutely blew my mind to learn this, and had he not been warned of the Hardy effect, I never would have appreciated it. Forget that anything ever goes wrong. How incredible is it that anything ever goes right? Of course, as the parent of a medically complicated child, you don't have a lot of time for philosophy. Suddenly we had to start thinking like doctors. I realized how ambiguous the practice of medicine is. Everything is open to interpretation. We learned that doctors are not magicians or gods. The best doctors were the ones who were honest and humble about what they didn't know. And one thing doctors knew nothing about was how to parent our children.

As one doctor said to us, "Never forget that he is our patient, but he is your son." Those first few years of Nadav's life were full of endless medical appointments, giving him medication, getting him to physical therapy. But you guys also had a lot of fun with your 3 boys, like, despite how sick he was.

Yeah, there was normalcy, and normalcy is chaos, and normalcy is unpredictable. We loved to play in the house. It was fantastic to just be silly a lot. Um, we would wake them up every morning by singing them college football fight songs, for example. We would read books in silly voices, which got on their nerves, which as a father I think is always, you know, very gratifying. Um, we went for long walks, we went to museums, we went to aquariums, we went to zoos. We just tried to get out and experience life as best we could.

Okay, so with the chaos in mind, you and your wife, Tali, decided to take the kids to a place that was really important to you. Can you tell us about that decision?

Yes. So Nadav had 3 surgeries before the age of 4, all of which went sort of well. But after the third surgery, I got an invitation to give a talk at a conference in Australia, and they were going to fly me business class. And I said to them, just off the cuff, like, "Could you turn that into economy tickets?" And they said yes. And so I suddenly had the opportunity to take our whole family down to Australia for very little money. You know, we're not rich. And this was a— this was an opportunity to sort of like show them a country that we loved because my mother is from there. We used to go every summer to Australia and I would see my grandparents. And so this was kind of a tempting opportunity. And it was one of those moments, and there are many of them when you have a kid who's medically complicated, where you have to weigh different things. The risk was that he was obviously a medically complicated child who had just had a surgery. And the benefits were that this was a place that we wanted him and his brothers to experience. And so we had long conversations with his doctors. They went back and consulted amongst themselves, and eventually we decided that we were going to go.

So you go to Australia, you get there. What were the first few days like? It was great.

It was absolutely great. I mean, we love the country for a reason. There's just something about being there that makes us feel whole.

It was fantastic for 2 weeks, and then 2 days before we were due to return home we noticed that Nadav was not looking well.

We sent a photo to his cardiologist in New York, and she said, "You should get him checked out." So we found ourselves going to the hospital on a day where we should have been going to the Blue Mountains and exploring the Australian wilderness bush. And the news we got there was not good. It was that Nadav had a clot in his circulation that they eventually determined needed emergency surgery. The operation lasted 10 hours.

7.5 on bypass. He emerged alive, just barely, and we were called in for a family meeting. The doctor in charge cut to the chase. Nadav is not doing well, he said, and there are 3 things that can happen tonight. First, he could improve, and I'm telling you now, that's not gonna happen. Second, he could hold steady, and that's what we're hoping for. Third, he could deteriorate, and in that case, there's nothing more we can do. I had done a pretty good job to that point of holding things together, but in that moment, I shattered into a million pieces. But Tali remained calm. She looked the doctor right in the eye and said, "So what you're saying is that it's up to him." "Yes," he said, "I suppose that's right." "Well, I can live with that," she said. "I trust him." What Tali trusted was something inside of Nadav himself. She put her faith in the mystery of how we grow and heal, the energy that causes the cilia to beat, the map that tells our organs how to form. She trusted the resilience of life, that somehow Nadav's body would find a way to heal. He made it through that night and many more. But he remained the sickest kid in the ward. More than once we were told that he was going to die.

But even as Nadav was clinging to life in the pediatric intensive care unit, James saw how the doctors treated his son as more than just a patient. To them, he was also a child.

One day the doctor in charge of the unit announced that he was going to take Nadav outside. This sounded absolutely ridiculous. He was intubated, he was in critical condition. It took 45 minutes to get him from his room to the elevator down the hall. But it was such a precious gift. Not out of pity or palliative care, but because he recognized that to heal is human. To feel the wind in your hair, touch leaves, smell flowers, to watch your brothers play, to be together as a family. It was an amazingly human thing to do.

In a minute, how James and his family got their incredibly sick child back to the U.S. from Australia for an experimental procedure, and how James managed to balance his trust in medicine while advocating for his son. I'm Manoush Zomorodi, and you're listening to the TED Radio Hour from NPR. Stay with us.

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This message comes from Charles Schwab with their original podcast, Choiceology. Choiceology is a show about the psychology and economics behind people's decisions. Download the latest episode and subscribe at schwab.com/podcast. It's the TED Radio Hour from NPR. I'm Manoush Zomorodi. Today on the show, honest conversations about the limits of medical treatments. James Robinson is the author of More Than We Expected, a memoir that tells the story of his third son, Nadav, who was born with a serious heart defect. We were just hearing how Nadav's health took a sharp turn while the family was on a trip to Australia. Nadav was intubated, in no shape to travel, and the doctors said they'd done all they could do. So the family was stranded there. That was until James's wife, Tali, read about a procedure being done in Philadelphia that could possibly be a lifeline.

There was a doctor in Philadelphia who was pioneering a new procedure, and it was from one of the greatest hospitals in the US, right? And so what was interesting about that is I don't think anybody else would have found that. As an option if my wife did not read medical journals. And the reason she read medical journals was because we were looking for absolutely everything that we needed to know to let this kid survive.

I mean, that seems kind of crazy. Your wife, to be clear, is not a physician.

But the dissemination of information in— I can only speak to pediatric cardiology— is, it's not haphazard, but it takes time to disseminate. This was a procedure that had been done on less than a dozen patients. So this was not something that had been accepted. I don't think it was even accepted in the hospital that they were doing it at. It was something that was experimental, right? And I think, you know, many medical professionals are obviously cautious about the things that they adopt because the stakes are so high.

Suddenly there was a flicker of hope for Nadav. But traveling thousands of miles to get him back to the US was complicated.

So his doctors in Australia and the doctors at Children's Hospital of Philadelphia did a lot of amazing work to actually plan out the logistics of getting a kid this sick home. Hmm. This was the furthest they had ever transported somebody this sick. They arranged to have a specially equipped Gulfstream III take off from Philadelphia with an incredible attending physician, two nurses, and a respiratory therapist. They flew from Philadelphia to Oakland, Oakland to Hawaii, Hawaii to Fiji, Fiji to Sydney. It was miraculous. You know, one of the nurses said, don't worry, we'll get your boy home. And then he unzipped his jumpsuit and underneath was a— he was from North Carolina and he was wearing a Greg Olsen jersey. Greg Olsen used to be a tight end for the Carolina Panthers, whose son also has a heart condition similar to our son's. And he had thought to wear that under his jumpsuit, right? And he unzipped to show us and we're like, who are these amazing, remarkable people? And it is so humbling, Manoush, to know that there are people who have chosen this as their profession, that have dedicated their careers to helping children like our son. Wow, right. But one of the problems with HeartKids is they drain into their lungs, they drain fluid, and he was draining 9 liters a day, which is hard enough to keep a kid alive in the hospital. They were going to do it in the flight, so they have to replace the fluids with something called fresh frozen plasma. The doctors in Australia had come up with a system of defrosting it at various stages throughout the flight so that they could replace his fluids. The issues with things like taking fentanyl across country lines, right, and cross borders. I mean, that's hugely complicated. The boys' visas had run out by this point, so we actually had to get the Australian border security involved. So the logistics in this were insane, but they got him home, and that was as much him as it was them. I remember when the doctor from the US arrived, she said, "Should we sedate him?" And the doctor in Australia said, "No, I'd avoid that unless you absolutely need to because he's likely to surprise you." And that was— that reflected the fact that he had gotten to know our son medically, right? That he knew how he reacted to certain things. He knew how tough he was. He knew what he could tolerate and not tolerate. And he was passing that knowledge on to the doctor, something that was not on his chart, but something that he felt in a very human way.

Was Nadav able to communicate with you at all at this point? He was on oxygen, right?

He learned to talk while intubated, which was insane. Wow. There was a speech therapist who showed up at our bedside. And we were like, why? Because this is a kid who's intubated and sedated. And we said, why are you here? No offense. And she said, well, because he can't talk. And she said, well, he can still communicate. She taught him how to communicate using his eyes, just pointing to the book he liked just by using his eyes. And then she taught him how to blow bubbles, and that was because she wanted to teach him how to speak. This is a kid who's intubated. And she taught him how to speak like he could croak through his intubation, which was the tube, which was insane. Talking is important, right? Like being with your family is important.

The procedure in Philadelphia was successful. Nadav was no longer in critical condition, but his underlying issues persisted. The biggest problem was that there was still some fluid in his lungs and we couldn't leave until it cleared. We spent 6 months in Philadelphia waiting for that lung to clear. In that time, Nadav learned to walk again, to talk again, to eat again, to smile again. We took him outside as much as possible. We wanted him to feel like a kid again, because we knew how important it was to help him heal. That lung did not clear, no matter what the doctors tried. They were completely baffled. Eventually, they decided to try a last-ditch procedure to address his lymphatic system, something that, that nobody quite understood. And thankfully, it worked. His lungs cleared. We were under no illusions about his condition. He still had a single ventricle. His body had actually grown all sorts of new connections, hoping to rebalance his circulation. And while I was amazed that his body was finding ways to heal itself, we knew it was unsustainable.

You actually sent Nadav to school, which you didn't get to talk about in your TED Talk. Can you tell me why you decided he should go to kindergarten despite how tough it would be?

We wanted him to live as long as possible, and we also wanted his life to be full. Right. And, you know, 4-year-olds, 5-year-olds should be in kindergarten. Right. Like, that's just a normal thing to do. So we decided when we got back from Philly after 6 months to enroll him in the kindergarten, the public school across the street. From our house. Nadav was not in great shape, even though he had sort of learned to walk again and, and write again. Like, um, he was on oxygen, supplemental oxygen, which meant that he had an oxygen tank that went everywhere, and he had a nasal cannula, these two things in his nose that gave him the oxygen he needed to breathe. And so our first meeting with the, the staff at the school was a little fraught, you know. Like, I think they wanted to help, but, but this is probably the sickest kid any of them have seen in their, in their lives. Especially like, the poor school nurse must have been looking forward to a year of skin knees, right? And all of a sudden she's handed the World Champion Cardiac Kid. Um, and this conversation was a little tense because there's a lot of logistics you have to work out— who's going to take him to the bathroom, who's going to take him upstairs, that sort of thing. But the, the teacher who would be in charge of him at one point looked over to me when it was especially tense and said, "Don't worry, we're human." And at that moment, I knew we were in good hands. She asked actually to come a little late to school so that she would have the time to explain to his classmates what was going on. And, uh, most parents or adults, when they see a kid with a nasal cannula, like, completely freak out. Like, it's all they will ever see. They will never be able to look past it. And that goes— that's true of anybody in a wheelchair or anything that's unusual. Adults have a really hard time with it. But kids, if you explain to them, um, what the nasal cannula is for, that is to give him oxygen that he needs to live and this is what the teacher did, kids will accept it. And they— that, that reassures them. And then they'll look past it. They will not see that anymore. All they will see is the kid. And so he developed incredible friendships there.

I mean, I feel like the story doesn't end well, James, and I hate that, like, you have to keep telling it over and over again. Um, he— your son died, and I mean, it upsets me. I knew your son. I know your boys now. I know you and your wife well. Um, I mean, as someone who was not with him every moment, it still came as a shock.

This is an interesting moment, Minouche, because this is not a difficult story for me to tell. It brings me great joy to tell this story because I'm able to share his life with other people in a way that hopefully makes an impact. And as a father, that's incredibly meaningful. Um, I had known this when he was born, that this was a possibility, right? And in his 5 years, I had to wrestle with that a lot, right? There's this thing called anticipatory grief that I think anybody who has a kid feels, right? And, and you are grieving almost from the moment he's born, in a way, even though you hope that he will live as long as he possibly could. And I think what had happened was, as a father, you feel the obligation to explain the world to your children, to tell them as much as possible. And I realized by this point that this was one thing I could not explain. This was something beyond my understanding. And so when the time came to tell the boys what had happened, I told them the truth, that he had died. And I trusted their strength and resilience to eventually be able to make sense of that, which is a very hard thing for any human to do. You know, it's, um— It's not an easy thing by any stretch of the imagination to have to face this, but we all have to face it.

Since then, you've written a memoir, and you spend a lot of time touring hospitals, talking to families of other patients, and especially talking to doctors. What do you tell them?

I've met hundreds and hundreds of people—clinicians, therapists, families. I've just met all these amazing people who are wrestling with these same issues, and I hear things that allow me then to take some of those ideas and share them with other medical professionals. And I think the ability to talk about medicine as an essentially human endeavor and all the implications therein is, is something that I think is not often taught in medical schools and, and does seem to have a big impact on those folks.

Like, what do you think the thing is that you say that surprises physicians the most?

I'll tell you the thing that I tell them that I think they need to hear the most, which is doctors have to be open and honest about what they don't know. They have to admit that there are limits to their knowledge, that a lot of these things are unpredictable and not as well researched or understood as they, as they should be. And I think that's important for them to admit that because it changes the dynamic between family and doctor to a point where you can both recognize that ambiguity as you make decisions. And I think doctors have a hard time doing that, um, and I, I understand why, you know, they'll, they'll be seen as not well trained or incompetent or, you know, but I think, I think there's a way of communicating that to families in a way that's reassuring and not, and not devastating, right? Which is to say, here are the things we could try Honestly, we don't know how they could turn out. In my experience, I tend to see things happening this way, but we don't really know what could happen. And this is a decision that we have to make together, I think is a very healthy thing to say to a family rather than pretending you have all the answers. Right.

I mean, I talked to a lot of researchers. Did you find yourself ever caught up in this idea like, well, you know, innovation is— and progress are so fast right now in medication and medical treatments and technology and gene therapies and all kinds of things, if we can just hang on, maybe there will be a breakthrough for us.

There is no doubt that medicine is advancing at a rapid pace. There are things that could have helped our son that exist today that were— did not exist 10 years ago. You realize that medical progress depends on people doing risky things, but not, not in like in a haphazard way, um, but in a way which is like, okay, you know, we've got to do something better than what we're doing now, and I think this might work. Right? And so most of the things we take for granted now are derived from procedures like that. Our son benefited from that. The reason he was able to leave Children's Hospital of Philadelphia was because of a lymphatic procedure, which is rarely done, which is not well understood at all— the lymphatic system or its effect on these kinds of patients. And so they're beginning to learn about this, in part because they do procedures on children like ours and learn from that. Are they risky? Yes. Do parents need to understand what it means to take those risks? Yes. But it's not just some sort of magical technical innovation that's going to save this, um, that's going to help this. Although technology does help, and investment in technology is hugely important, it's humans incrementally understanding these mysteries which are hidden to us, um, and sort of working their way past them as best they could. The 3 surgeries that our son had are temporary. Hopefully kids in the future will never have to endure them. They're not fixes. They are elaborate hacks designed to twist the body's circulation into a stable state in the hopes that they can grow old enough to be eligible for a transplant or to be able to have a good chance at a transplant, I would say. Um, but, but is there a magic bullet? Sure, maybe 80 years from now. Somebody will be diagnosed with a single ventricle in utero and, and the doctor will say, we'll just take care of it before they're born. I'm sure that's going to happen. But Manish, I actually believe that as humans we have to come to terms with the fact that there's things we will never understand. And, and this experience taught me that, that there was always a limit to what you can know. Um, and I think the humility to accept that helps you cope with that, that terrifying reality in a way that allows you to live your life and find grace in, in the things about humanity that do matter and that are really important.

I've already told you how this story ends. Well, here it is. 5 months after we returned home, Nadav died. And when I held him in my arms that night, I felt all sorts of emotion—pain, sadness, grief—but the emotion I felt most of all was pride. Parents live for these moments of pride: graduation, getting married, having kids. I realized that many of these things we would not experience with Nadav. But in his 5 years together, we experienced as many moments of pride as most parents feel in a lifetime. And then it was time to tell his brothers, the one thing I had always feared. When I think back to that moment, I think back to conversations I would have with my own father when I was young. We would go outside at late night and we'd look at the stars. He'd explain to me that we were seeing the stars as they were millions of years ago, that even though they appeared in the sky, some of them may no longer exist. I asked him what was between the stars, and he said, "Nothing." I refused to accept this. We argued about it endlessly. I could not imagine such a thing as nothing. My father's own father had died when he was just 16 years old. I grew up afraid of death, terrified of the concept of nothingness. And when it came time to tell Nadav's brothers that he had died, I felt the same sort of dread. As a father, I always felt it was my job to teach my children about the world. But until Nadav was born, I didn't realize how much our children teach us. Our 5 years together taught me what it means to be human. It revealed unexpected wonders. And it made me realize that there are some things we will never understand. And so when the time came, I told his brothers the truth as best I could. "Your brother has died," I said. Confirming against my will the empty darkness that surrounds every shining star.

Thank you.

That was author James Robinson. His book is called More Than We Expected: 5 Years with a Remarkable Child. This interview was done in partnership with the team at TED Talks Daily. You can hear James's full talk and much much more on the TED Talks Daily feed. Thank you so much for listening. This episode was produced by Matthew Cloutier, Avery Keatley, and TED Talks Daily's Lucy Little. It was edited by Katie Monteleone, Sanaz Meschgenpour, and me. Our production staff at NPR also includes Rachel Faulkner-White, Fio Gieran, Harsha Nahada, and James Delahoussaye. Our executive producer is Irene Noguchi. Our audio engineers were Damian Herring, Patrick Murray and Ted Mebane. Our theme music was written by Ramtin Arablouei. Our partners at TED are Sal Khan, Logan McClure-Davda, Helen Walters, Roxane Hailash, and Daniela Bellarezzo. I'm Manoush Zomorodi, and you have been listening to the TED Radio Hour from NPR.

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