James Robinson's Emotional Odyssey: Love and Loss in a Heart Family

What happens when your entire world is defined by hospital walls and medical jargon? On "Heart to Heart with Anna," we share the poignant and raw journey of James Robinson, a father who walks us through the emotional highs and profound lows of raising his son Nadav, who was born with a congenital heart defect known as single ventricle heterotaxy. James recounts the myriad surgeries, complications like asplenia, and the heart-wrenching impact of eventually losing Nadav. This episode offers deep insights into the resilience required to face such relentless challenges and the indelible way it shapes family identity and daily life.

Explore the extraordinary resilience of families navigating medical crises. Genetic testing unveiled a unique mutation in the H5 gene carried by both parents, prompting profound reflections on fate and family dynamics. James shares invaluable strategies for maintaining family connections during prolonged hospital stays, emphasizing the importance of honesty and openness. The emotional journey reveals lessons about life, love, and humanity learned through the lens of a family's extraordinary experience with severe health issues.

Finally, we highlight the vital role of the hospital ecosystem in preserving humanity. Through heartfelt anecdotes, James discusses the indispensable support from nurses, therapists, and other professionals who added depth and compassion to Nadav's care. This episode also explores the lasting impact of connecting with a community of adult congenital heart disease survivors, offering solace and continuity for those affected. Join us for a compelling and heartfelt conversation that underscores the power of shared experiences and the transformative strength that love and community bring in times of profound adversity.

Helpful Links Mentioned in the Episode:

James Robinson's website: https://morethanamemoir.com/

Leigh Kamping-Carder's Interview with James Robinson: https://theheartdialogues.substack.com/p/meeting-adults-with-congenital-heart-disease

Become a subscriber: https://www.buzzsprout.com/62761/support

We appreciate it when people support Hearts Unite the Globe podcasts. Thank you to our newest supporters -- Annie Ulchak (Patreon) and Judy Miller (Buzzsprout)!

Transcript

Speaker 1: 0:46

Welcome to Heart to Heart with Anna. I am Anna Jaworski and your host also a heart rock to an adult who was born with a single ventricle heart and who is 29 years old. That's the reason why I am the host of your program. Today. I have James Robinson with me. James is married to his wife, tali and is the father of three sons Gilad Yaniv and Nadav. And is the father of three sons Gilad Yaniv and Nadav. In 2017, his article Road to Recovery was featured on the front page of the Times Sunday Travel section, describing a road trip his family took after the death of his five-year-old son, nadav. The piece was translated into two languages, receiving scores out of a Christian comment, and was selected as a notable essay in the Best American Travel Writing for 2018. The overwhelming response to the article inspired James to write his book More Than we Expected Five Years with a Remarkable Child, detailing the many gifts of his son's brief but remarkable life and finding strength in the most unexpected places. So welcome to Heart to Heart with Anna James.

Speaker 2: 1:55

Thanks so much, anna, it's great to be here.

Speaker 1: 1:57

Well, I so enjoyed reading your book. It touched me in so many ways and I wasn't expecting it to, because my child is going to be 30. But your book was really touching. So probably a lot of my listeners haven't read your book yet. So let's start from the top and have you tell us about Nadav's congenital heart condition?

Speaker 2: 2:19

Yep Nadav was diagnosed in utero with a significant congenital heart defect single ventricle heterotaxy which we found out later was a function of primary ciliary dyskinesia. We did not know that at the time, but I'm sure a lot of you listeners are very savvy about heart conditions, just in case they aren't. It basically means that the heart is born with a single ventricle, not two as we normally have, and that requires three surgeries, which are palliative, and the goal is to get him to teenage years where he would be a better candidate for a heart transplant.

Speaker 1: 2:53

Right. Like your son, my child was also diagnosed with a single ventricle condition, not heterotaxy but hypoplastic leptoxyndrome, and then later they changed it to single ventricle and my child has had three surgeries and they told us that transplant might be an option. But it seems like in your case it was going to be a potentiality.

Speaker 2: 3:15

It was potentially possible, but I mean, there were no guarantees in anything in our journey. As you know the heart surgeries themselves they're all incredibly complicated. We actually ended up having four surgeries, one of them unexpected, so I don't think there's an easy path through this for any of us, and that was one of the reasons I called the book More Than Me Expected, because things ended up going sideways in pretty spectacular ways.

Speaker 1: 3:36

Right, and with hebrotoxin it's even more complicated in some ways than what my job was formed with, because some of the other organs can be on the other side of the body, isn't that true?

Speaker 2: 3:46

That's right. Yeah, so Nadav's organs were all a little off His lungs chambers were not the same as ours. I think he had two left or two right, and one of the things that is amazing when you come face to face with a condition like this is you realize how incredible the body is and how magical it is, if anything happens at all, and you end up learning a lot about anatomy.

Speaker 1: 4:05

Yes.

Speaker 2: 4:06

Unfortunately. So I know a lot about lungs. I know his intestines were at a greater risk of twisting into what they call volvulus, which I resolved never to think about because it was terrifying. He was a splenic, which also was very difficult because it meant that he was more susceptible to infection. So from birth he was on a prophylactic course of amoxicillin and when we met with the infectious diseases guy we said what questions do we have to take? And he said just treat him like your son, you can't keep him in a bubble.

Speaker 2: 4:32

And we really took that advice to heart and in fact, being a splenic sort of granted us a certain special VIP status in the pediatrician's office because you didn't have to wait with everybody else. You just whisper that he was a splenic and they whisk you right into your own private room. And I think that's one of the interesting things that I didn't expect when we were thrust into this journey was that, although there's a fair amount of terror when you're in this situation, you also feel a great deal of pride in your child, both the resilience and how special kids are, but also in yourself as you pick up all this medical knowledge, all these medical skills all these things that you have to know, and all these hoops you have to jump through and not to be too sad about it when your child dies.

Speaker 2: 5:13

that's a very difficult thing to cope with, because not only have you lost your child, but you've lost that part of your own identity. Suddenly, all those things are rendered irrelevant and useless yeah.

Speaker 1: 5:23

Dealing with a child with a chronic illness, especially a congenital heart defect. That's become a significant part of your identity and your routine. Things are very different. You're saying that your son was splenic, and for those of my listeners who don't know what that means, that means he was born without a spleen and a spleen is really critical to combating illnesses and germs. So the fact that he didn't have that organ to help him meant that he was at more risk for infections and that's why he was a top priority patient when he would go to the hospital.

Speaker 1: 6:03

So yeah, I learned a lot about that by reading your book, because my child does have a sleep and I had no idea how critical that was. I do know that as adults, sometimes people lose their spleens. I live in Texas, where football is king and it's not uncommon, sadly, for kids to have accidents on the football field and sometimes it deals with the spleen, and I've actually heard of people who have had to have their spleen removed because of football accidents. So I knew that you could live with that one. I didn't realize how critical it was. I said fit to have one.

Speaker 2: 6:40

It's important, but it was the least of our worries. We've learned to prioritize things in a really weird way. I remember in his first surgery, which was a BTT shunt, he came out and his left lung was collapsed and for most parents even certainly my parents, when they heard the news they were completely freaked out. It was terrifying for them, but we knew that was the score and we knew that that was something to expect and we knew it wasn't such a big deal in the grand scheme of things. So it does kind of reorient how you prioritize all these things.

Speaker 1: 7:05

Yeah Well, I think it's not uncommon for kids who undergo open heart surgery, especially a lengthy open heart surgery, and I know for us our BTT shop was eight hours. That's a long surgery and unfortunately it's not uncommon for that lung to collapse and you're just waiting on pins and needles to see if it will re-inflate and how things will go, and dealing with the pleural effusions in the meantime. And we can talk more about that later. But right now what really fascinated me was when I was reading your book and you were talking about embryonic cilia. This was something I had never heard of, the magical path of proteins. So I'm sure, since it's new to me, it's probably new to a lot of my listeners as well. Tell me how you learned about this and what all that means for those of us in the heart world.

Speaker 2: 7:54

Like I said, being in this situation puts you face to face with the things that you don't know and will never know, and will never understand, and some of those things are incredibly terrifying, like the thoughts that your son's body is malformed and you may outlive him is terrifying and not to know when that might be a possibility or when it might happen.

Speaker 2: 8:10

It's horrible, but it does open your eyes to these wonders that you don't ordinarily realize. When our first son was born, you walk out of the hospital and you're on cloud nine because you're face to face with the miracle of life Right. But when something goes wrong, it makes it even more astounding that anything ever goes right.

Speaker 1: 8:27

Yes.

Speaker 2: 8:28

And that is a real privilege, I think to have that.

Speaker 2: 8:31

It sounds very strange to say, or strange for other people to hear, I think, but for me it was certainly true, and one of the things that it taught me was how the body forms, because I was quite curious about what might have caused this condition. Nobody ever really said anything about any of this. I had to go research it on my own and I found it in the New York Times science section. There was an article, I think, a year after he was born, about how the body forms in the first few weeks after conception, when the embryo is incredibly small it's perfectly symmetrical and how that perfectly symmetrical little tiny thing actually knows how to grow into a human being.

Speaker 2: 9:07

And it turns out that on the surface of the embryo there are these little hairs called cilia. Tenth grade biology might look on microscopes, right? And you see amoebas and paramecium, right, and you see them sort of swimming around and they're beating their little hairs to move around. Those are cilia and the embryo has that too. And what the function of the cilia in the embryo is that it beats the amniotic fluid around the embryo in a certain way, right?

Speaker 2: 9:33

So there's like a little swirl and the direction of the swirl dictates how the proteins in your body are laid out that will eventually form your organs. So the path of the amniotic fluid which is beat by vasculia moves around and that lays out the proteins which then form the organs. If they're beating the opposite way, the wrong way, so to speak, your organs will form in a complete mirror image and that's something called situs inversus and I think one in every 10,000 people has it. Most people don't even know it because you have no reason to know it. Your organs are a complete mirror image of what they should normally be. They're perfectly functional, they're just back to front.

Speaker 2: 10:10

But in extraordinarily rare cases, the cilia, if they don't beat properly, the proteins don't follow the right map and they don't follow the right path and that leads to defects, like what happened with our son with heterotaxy, and it affected all the other organs, as you mentioned, and also affected his heart, and it was because the cilia were not beating properly. Now, the most crazy thing about this to me, when I read about it, was this whole process happens in about three hours, so in enough time for dinner and a movie. The path of your organs is dictated and formed, and obviously this may have happened even before we knew we were pregnant, but there was something about the malformed cilia that had dictated all these things, and I found that incredibly so, and what's amazing is he has a twin and the twin did not have that condition, and the twins part is perfectly fine yes, yes, they're not identical twins.

Speaker 2: 11:04

They're about as different as twins can be actually, which is great. I mean, I think that's great but you're right, I mean how does fate dictate that this happens to one and not the other?

Speaker 1: 11:13

I don't know, wow. But you took it a step further and you learned that you have a mutation, a genetic mutation in the H5 gene.

Speaker 2: 11:27

Okay, so now You're going to have to promise to buy the book now. I know right Give away one of the best parts of the book this is amazing.

Speaker 1: 11:34

I'm sorry for giving it away French. I have to buy the book because this is just amazing. When I got to that point I thought, wow. I remember being so angry when I asked the doctor what caused my child's heart condition and my doctor said, oh, it's a fluke of nature. That was so not satisfying, james, and I thought, no, it's not. You may not know the answer. This was not a fluke of nature. This is happening to way too many people for this to just be a fluke of nature. So you took it a step further. You got genetic testing and what amazed me was how everyone, except for his twin, also has this condition.

Speaker 2: 12:13

Okay. So let me tell the mind-blowing secret three quarters of the way through the book. It's okay. Enjoy your podcast and I want to keep your listeners happy.

Speaker 2: 12:22

Here's the incredible truth behind this condition. When he was born it didn't really matter to me at least why his body had formed the way it is. We had this reality, we had to deal with it and what had caused it was kind of academic. I sort of assumed it was a random mutation, not necessarily genetic, but I didn't really know because we were so practical in terms of figuring out what's wrong. Sure, years later, when he was discharged from a long hospital stay, he was seen by a counselor who was doing a study on kids with heterotaxy and they asked if we would mind doing genetic testing for this study that they were doing. So they took his blood and they took my blood and they took Tali's blood. It was actually kind of a funny moment in the hospital because I went with Nadav and he was like a pincushion and I had to get my blood run and I was not happy about it. He was a very wise soul. He gave me this look at five years old and like get over it.

Speaker 2: 13:11

We got the results back and it turns out that, as you mentioned, this primary ciliate is kinesia. It can be caused by many genetic mutations, but ours was caused by a genetic mutation in the H5 gene which had never been reported before. It was completely unique. Now, this is not in itself surprising, because they're just starting to do these studies, so there may be a lot of cases out there that they haven't seen yet, but it was rare. Right, it's definitely a rare thing, sure, but the incredible thing was is when our results came back and it turns out that my wife and I have the exact same genetic mutation, the exact same one that had never been reported before.

Speaker 2: 13:52

Right which means that we have a common ancestor, about 500 years ago, who had this genetic condition.

Speaker 1: 13:59

Amazing.

Speaker 2: 13:59

Passed it through all the generations. We finally met. We fell in love, unwittingly right that we were eighth cousins or whatever with the same mutation. We met, we fell in love, we had kids and it resulted in one of them having this heart defect. And it really forces you to consider the really serious and interesting questions of fate, right and destiny, because I don't know that I would have done anything different. What am I supposed to do? Not marry my wife, not have these kids and this is going to sound maybe weird to some of you listening, maybe not.

Speaker 2: 14:33

I don't think I would change anything about his condition, except probably the end, because it was his life and that's who he was. And if he didn't have that, then he would be somebody different and we loved him for who he was. So this great cosmic coincidence brought this amazing kid into the world who taught us a lot about what it means to live, what it means to be a parent, what it means to heal, what it means to be human. And that's part of the reason that I wrote the book is to maybe communicate. I mean, it sounds like a very sad topic, right, a child born with a heart defect and dying but it was such a privilege to see the wonder that his life brought us, and that's what I really wanted to share with folks, and so that's what the book is about.

Speaker 1: 15:15

I think sometimes the medical community doesn't realize how important that family connection is when a child is hospitalized. I think that's changing. Your family spent an inordinate amount of time in the hospitals when the dog was young, so can you share some things with me that your family did to stay connected? I know nowadays, since COVID, things have changed and now people bring tablets in and they'll Skype or they'll FaceTime, but back when your child was born, and definitely when my kid was born, we didn't have that. It wasn't a thing. So talk to me about how your family stayed connected.

Speaker 2: 15:55

Okay, I have to tell you a little bit about our journey for me to answer that question properly. We had three surgeries before the age of four one at five days, the VTT shunt, one at five months, the Glenn, and then one just under four years, the Fontan, and each of those were inpatient but they were relatively brief four years the Fontan and each of those were impatient, but they were relatively brief.

Speaker 2: 16:13

Right, it was mainly just for the recovery. When I say brief, he was in the NICU for 49 days, right, so it's not terribly brief.

Speaker 1: 16:18

But that is not when I would consider but that is.

Speaker 2: 16:24

but that is also when he was abstract, little lump I mean he hadn't really opened his eyes.

Speaker 1: 16:27

He was just born, he was a newborn.

Speaker 2: 16:28

Well, he was the twin. He was the twin. So his twin was like vigorously bawling in the other room because he was completely healthy and his brother was in the NICU being watched by these amazing nurses. And one of the things that was really important to us was we didn't want to keep secrets from each other, and certainly not from the kids, and Gilad was four when they were born.

Speaker 2: 16:47

And we made a promise to him that we would always be honest with him about what was going on, as best we could, and in return, we expected him to be honest with us. We would get angry. If there's something that he wanted to talk to us about, right, feel free to do it. But it was really important that he knew what was going on, so we told him everything and we didn't use euphemisms. One of the things we found, as you'll see in the book, is we learned to trust like kids' they have a special strength I think adults lack, which is interesting.

Speaker 2: 17:12

But even when we're outside of the hospital, it was really important for us to build a family and keep things normal, like we didn't want nadav to be the sick kid all the time. We wanted a normal life and for us as a family, that was expressed to traveling. For me, to move is to live. I felt an obligation as a parent to show my kids the world right, and so we did these crazy road trips, even after a couple of surgeries. We flew to the West Coast, we flew to San Diego into Legoland and the zoo, and they met cowboys with flaming lasso, and that's living to me Sure.

Speaker 2: 17:43

Right. One of the doctors involved in his care said to us once never forget that he's our patient, but he's your son. And I really took that to heart.

Speaker 1: 17:52

I loved it when I read that in the book. I loved it.

Speaker 2: 17:55

Yeah, I thought that was real wisdom. I tried in the book to collect all the pieces of wisdom that we accumulated along the way, because some of them are quite profound, and that was one of them.

Speaker 1: 18:03

Yes.

Speaker 2: 18:04

Unfortunately, one of the trips we took did not end well. We decided to go to Australia, which sounds like a pretty random place to go, but my mother's from Australia. We had taken Gilad when he was born. He met his great-grandfather. It's a country that we love. I had the opportunity to fly down because I was going to a conference for virtually nothing. And I said to my wife let's take the kids. And we thought long and hard about it and the doctor said it's a long way for a kid.

Speaker 1: 18:26

Yeah, absolutely, and he was young.

Speaker 2: 18:32

He was absolutely and he was young. He was young. He was four years old and he had had this heart defect and three surgeries and it wasn't guaranteed that everything would be okay, but we figured it was worth the risk because that was life right and that was something we wanted to share with our kids yes so we spent two weeks down there.

Speaker 2: 18:42

We saw kangaroos, we experienced the country, it was great. And then he didn't look so well and so we took him to hospital down there and it turns out he had a clot in his front hand, which which required emergency surgery which lasted 14 hours, which is crazy. Seven and a half hours on bypass and suddenly we found ourselves in hospital in a foreign country with foreign doctors, not knowing us. The kids are stranded there in intensive care and critical condition, and that's where it was really like. How do we start adjusting to life where your life does revolve around the hospital?

Speaker 1: 19:11

Right, and thankfully you had family so that other children had places to go, but you still involved your family in the hospitalization. I was really impressed with how you did that, so can you talk to us a little bit about how you did that?

Speaker 2: 19:27

Yeah, I think one of the amazing things when you go to hospitals you think about doctors a lot, but when you live there, really live there, and we lived in that hospital for three months and then when we got back to the United States, we lived in another hospital in Philadelphia for six months. Yes, you learn to appreciate the ecosystem of the hospital and all the people who are there. So the nurses are obviously hugely important In many ways. They're the representatives of humanity and care. Right, hugely important. In many ways they're the representatives of humanity and care right, Like that is their job right Is to make sure you care for the person and not just the patient.

Speaker 2: 19:56

But there are other people there as well. There's therapists physical therapists, occupational therapists. There's child life people. There's music therapists. This is the thing I learned to appreciate. They're not just there to entertain the kids, do a little song and dance, they're medical professionals. They are there to provide an important function, because it is very easy in a hospital environment to lose your sense of humanity, and preserving that humanity was really important.

Speaker 2: 20:18

I'll give you one example of one of the things in Australia where we're able to do that which never would have happened in the US when Dove was not well, he was intubated and the doctors had told us that he was not doing well and that things were looking very dire. And then the next day one of the lead doctors said I'm taking him outside. We're going to take him outside, intubated, mind you. And I was like what do you mean? He said you were going to take him outside and it wasn't pity, it was just this is a human kid who needs to be outside. And the other profound thing that a doctor there said to us was you just have to be patient because I have to get to know him.

Speaker 2: 20:54

Yes, and that was so profound because American doctors are like they have a swagger I'm here to heal your kid, right? He understood that the process of healing is something that comes from within.

Speaker 1: 21:05

Yes.

Speaker 2: 21:05

Only Nadav could heal himself, and his job was to give him the best opportunity he could to heal himself. And going outside and being human was a part of that. It took about an hour to wheel him.

Speaker 1: 21:15

He ran in the elevator and outside and they've got a travel ventilator and three nurses.

Speaker 2: 21:22

But it was incredible. It was an incredible gift.

Speaker 1: 21:24

Yes.

Speaker 2: 21:25

And I think it was hugely important in his care and when we got back to the States, being outside was something that was hugely important to us. So we started exploring every inch of the hospital. I mentioned people who are in the hospital who are hugely important. Security guards are super important. You have to get to know the security guards and you can tell a lot about the hospital from the security guards too, because they take on the personality of the place, and the people in Philadelphia were great. They would literally open doors for us so we could go explore. So we started sneaking him off campus.

Speaker 1: 21:59

We broke all the rules. We took him out in the car for a drive around the city, like all these things. I couldn't believe you did that, oh my gosh. And the security wasn't ready.

Speaker 2: 22:03

after you say so, yeah, I guess that was a possibility, but it was super important for his care as a person and not just a patient, and I think that's one of the things we learned in hospitals was you don't stop being a person when you're in there even though some people may treat you that way, sometimes you have to advocate for, hey, there are some things that are important, that you need to feel human.

Speaker 1: 22:24

Right, I loved it. You painted such a vivid picture with your words. You really did such a great job with your words. You really did such a great job with your book to help us feel like we were right there with you trying to negotiate getting that bed out. I just couldn't believe that they did that.

Speaker 2: 22:40

It was really hard work. It was really emotionally draining. It was not sunshine and rainbows. Every day was a battle. We're lucky to have amazing people taking care of him, but even that, it becomes your all-consumer focus.

Speaker 1: 22:51

But what I loved was that the other children came to be outside with Nadav and Nadav could watch his brothers play and I'm sure that brought a smile to his face and I'm sure it made him feel more connected to the family because he had to have felt so isolated. And you guys found really creative ways to bring that sense of family into the hospital.

Speaker 2: 23:18

And not easy for his brothers, obviously, to have their brother in hospital. I think one of the problems that we always feared was that their imaginations would run away with them and they would imagine all these terrible things, and for us it was always better to see it than to imagine it. But that takes a toll too, to see it than to imagine it. But that takes a toll too. To see it it really does. But they were incredible. I mean, I remember when he was back home in New York they would play doctor, they'd get all the medical supplies and they'd put him on the bed and he would be the patient and he was used to being the patient. They could be the doctors, but they got to participate in it and I think, although that is a difficult thing even for an adult to do, to be witness to it yeah I think not being part of it, which happened at times, to be honest with you but you couldn't

Speaker 1: 24:03

it's really hard yeah yeah, you couldn't let them see everything. I remember we had a three-year-old son when our second child was born and I wondered how this was going to affect joey, because we had a three-year-old son when our second child was born and I wondered how this was going to affect Joey, because we had to go to a different town. He had never been to daycare. I was going to stay at home alone and I remember saying to Frank we need to take pictures, you need to take some pictures to Joey. Joey needs to know that we're taking care of his sibling and that everything is going to be okay, or that, if it's not okay, that we did everything that we could. But I didn't want him to see the baby intubated.

Speaker 1: 24:40

I was afraid that would be too traumatic for a three-year-old. We were lucky we were able to take pictures before and after the intubation able to take pictures before and after the intubation and Frank was able to go home and talk to Joey and show him. The nurses and doctors were on them because we said can we take pictures of you so that our kids because I didn't want a three-year-old up there in the pick year he was in the pediatric intensive cardiac unit. They did not want him to come up there until he was in the step-down unit. Because three did not want him to come up there until he was in the step-down unit. Because three-year-olds and germs are pretty synonymous.

Speaker 2: 25:17

Yeah, yeah, we had that when Nadav was in the NICU. Gilad was four. He came to visit.

Speaker 1: 25:22

He would sing to him.

Speaker 2: 25:23

We thought that was important. But, even when they were much older. And I think you're right. It is a judgment call sometimes, especially with very young kids, about what they can see and what they can't. But adults recoil from this stuff. Even when you're just walking along the street they recoil. You know, when Nadav came home he was on oxygen, His oxygen levels were low and he had a nasal cannula. He also had an NG tube.

Speaker 2: 25:46

People would look at that and that instant of like ooh right, but he went to kindergarten, which is a remarkable part of the story, as well.

Speaker 2: 25:52

His teacher was so wise. She said let me explain to the class what's happening before he shows up. And she explained all the things that they could expect. So the nasal cannula she said it's there to give him oxygen. Right, he needs extra oxygen. It gives him oxygen. Well, adults, they see a nasal cannula and it's like he's on his deathbed. Kids look at the nasal cannula. Once you've explained it to them that he needs oxygen, they're like well, that's a good thing, right, get some oxygen, great. And then they just look right past it. And that is something I think adults can learn from.

Speaker 1: 26:23

That's well, absolutely. I remember having another guest on my program some years back and she had a child who was a few years older and, like you're saying, the child had to be on oxygen and her little one said, well, let's call this and I can't remember what name they gave it, but they named the oxygen concentrator. I thought, yeah, we have to bring whatever the name Steve with us wherever we go. That's great.

Speaker 2: 26:52

One of the only tricks he knew as a parent like I, took him to a firehouse Because I wanted him to see that the firefighters, these big, burly guys, they needed oxygen too. They had their own tanks. So I'm like, okay, here's your tank, here's their tanks. They're big dudes, they're strong, they need oxygen too. That's fine, didn't need any of that. He was such a wise soul. I haven't really told you much about him. He had this curly blonde hair. He was a really old soul.

Speaker 2: 27:13

He was named after his great-grandfather who had been a partisan in the woods of Poland blowing up Nazi tanks for four years who survived that and ate more surgeries. We wanted to give him that and he sort of inherits that wisdom, but he would be a participant in his medical care. This is a kid who when he was five, stuck in the hospital with a cloudy lung that wouldn't clear, insisted on being on rounds and they would round every day and they would show him the x-ray again, not in a condescending way, and he'd sit there and ponder it for a few minutes. He'd absorb it and you don't quite know what's going on in a five-year-old's head. But I think he understood a lot of what was going on and often doctors who didn't know him were very condescending to him.

Speaker 2: 27:49

He had to learn how to walk again. He had these things called knee immobilizers. They put on your legs when you learn to walk again because his muscles have had to repeat. And one of these new doctors came up to him and said have you worn your leg huggies today? And he looks her right in the eye and he says knee immobilizers.

Speaker 1: 28:13

And the doctor wasn't meaning to be disrespectful, but that just goes to show how brilliant our kids could be. And I know that when my baby was in the hospital as a two-month-old infant that we were looking at my baby and one of the nurses said to me that baby is a wise soul, mm-hmm, and I thought you are so right. And my child, as she was growing up, also came up with stuff sometimes that made me think there were so many different similarities like that. You did such a big job of portraying what it's like to raise a child with a chronic illness, but especially with a critical congenital heart attack.

Speaker 2: 28:59

Thank you, thank you, yeah, this is why the parent-doctor partnership is so important, because you both see different sides of the child and it's only by seeing the whole picture that you can really make informed decisions. And even then things can go wrong. But we had an instinct, a medical instinct, about what things were right for him or what were the doctors could not see, because we just spent different time with him and doctors saw a side of him that we didn't see. I remember the surgery in Australia. We met with a surgeon afterwards who had spent 14 hours inside him, like literally, and I said can you tell anything about him from operating on him? And she said I can tell he's a tough cookie.

Speaker 2: 29:35

She was like the scarring in there. That was some pretty impressive stuff and I didn't quite know what she was talking about because I didn't see it, but she knew by touching and feeling what his literal body was like, the toughness that ran through him, and she was completely right, completely right the toughness that ran through him and she was completely right, Completely right.

Speaker 1: 29:56

In your book there are so many different levels. It's like an onion. I just kept peeling back four or more layers and I was like yes, he gets it. I've read some other books written by heart parents and they didn't touch me the same way that your book touched me, because I felt like some of them were dealing with so much problems that they blew things out of proportion or they just would very lightly touch something. When someone was led to that, I knew there was so much more to the story, but I don't know if they were afraid of freaking people out or they hadn't really dealt with it themselves. I don't know, but it's like they couldn't really handle that. You really tackledled everything head on. It's like you really weren't afraid to deal with a lot of the tough topics yeah, thanks.

Speaker 2: 30:39

It's hard for me to like weigh in on other people's experience, but I didn't read any of the other books until I finished mine because I didn't want to be influenced by it okay, and now? I have a library of these books that I've read and you're right, they're very diverse and they're all idiosyncratic and unique to the person who wrote them, that's for sure. I need to write this thing.

Speaker 2: 30:57

I need to get it down on paper, mainly for his brothers, as I say in the introduction, but also the hopes it would help people and doctors who are caring for kids like us, so that means a lot to hear you say that. Thank you, yeah.

Speaker 1: 31:10

Well, I want you to tell my listeners more about your book, more than we expected, five years with your remarkable child. And, first of all, I want you to ask where can we get it? Because now that everybody's heard all these amazing stories, I know they're going to want to read more. Because, friends, we have just barely touched on what you can read and minispecify when can we find?

Speaker 2: 31:30

your book. The book is available on Amazon and most major online retailers. If you want to know specifically where to get it, the best way to go is the book's website, which is morethanamemoircom. I know that's different than the book's title. The book is more than we expected. The website is more than a memoir. I couldn't get the domain. It's caused all sorts of confusion, but that is the best way to find the book. You can also go to your local bookstore and they'll order it for you. You can go to your local library and ask them to order a copy.

Speaker 1: 31:57

Do all of that, friends, because you know what your library needs to have a copy of this book. So please go ask your librarian for it and go ahead and order a copy, because you're going to want a copy in your library. Friends, if you're on your exercise bike or you're driving to work, don't worry about getting a piece of paper and a pen. I will have the links in the show notes. So now tell us a little bit more about the book. We already know why you wrote it, thanks to the New York Times article that you wrote. I have a feeling there was more to it than that.

Speaker 2: 32:29

Yeah, the thing the article that I wrote for the Times taught me is that our experience touched other people.

Speaker 2: 32:34

The article was about a road trip we took after he died. We went around the country because we need to get away, we need to be distracted by the world, but what we found is it was just a really great way to cope with the loss. And other people had to have that experience and in response to the article, they wrote these comments which were really touching and meaningful. So that taught me that other people could benefit from hearing our story perhaps. But I also needed to write. I didn't want the story to evaporate, but I needed to get it out of my brain. I sat down every day and I wrote a thousand words about a particular topic, just as essays. I wrote once about hearts, I wrote about doctors, I wrote about parenting, I wrote about parking, I wrote about food. Parking is super important. All the stuff about parking is taken out of the book. Parking is super important.

Speaker 1: 33:14

There's so much to park in, especially when you're in a hospital that requires you to pay for parking every day.

Speaker 2: 33:20

Maybe this will be the long-awaited sequel to, more Than we Expected Parking story. It's from A Parent on the Front Lines, but anyway, I wrote these essays because I need to get them out of my brain and onto paper and then I thought maybe this is something people would want to read. But more than that, I really wanted to have this available for his brothers.

Speaker 1: 33:39

Yes, like.

Speaker 2: 33:40

I wanted them to understand what we had been through from a father's perspective, and I don't know if they're quite ready for it even now, but when they're old enough to really appreciate that, for it even now, but when they're old enough to really appreciate that, hopefully they'll have some memories of their brother in there. But it will also have my perspective on it and hopefully that will help them. So that was one reason and then I really think my hope is that it helps people caring for children, like our son, whether they're alive or not, and there's a big gulf between parents whose kids are alive and parents whose kids aren't.

Speaker 2: 34:07

I know that, but my hope is that it touches parents in both situations and then also the people caring for kids, like Nadav doctors, nurses, all the people, even security guards, that they can understand maybe a little better about what it means to take care of patients from a human perspective and not just a medical perspective.

Speaker 1: 34:24

Yeah, I don't think there's this big a gulf between the parents of children who are living with CHD and the ones who have CHAS In my almost 30 years of being part of this community. As soon as you have a trauma or a heart defect, you're part of a big community and what I have seen happens is when a child CHAS is a lot of the bereaved parents don't feel like they can still be part of that community because they're afraid that their story is every parent's worst nightmare.

Speaker 2: 34:58

That's right.

Speaker 1: 34:58

Therefore, they feel like they have to exclude themselves from being part of the NCHD world.

Speaker 1: 35:04

But I do have some friends who haven't done that and who have stayed part of the community because they realize that they do have stories like you do, some bits of wisdom that they can share with the CHD community and they continue to be advocates. I will admit, it's far fewer people who stay involved and some of them have to leave and then come back. And that's fine, because the same thing is true with our parents is that sometimes, especially when you're dealing with that initial diagnosis, you can't get enough information and then all of a sudden you have too much information and you have to take a step back, or life happens and we do what you talked about, which is we're raising our kid and we're not letting the CHD be the focal point anymore, but then something will happen and it'll bring people back. So I've seen this ebb and flow with parents who have children with CHD and even with children with CHD who have passed. So I hope you won't exclude yourself from the CHD community, because I feel like you still have a lot to offer.

Speaker 2: 36:09

Thank you, yeah, I appreciate that. I think a couple of things. First of all, grief is a very lonely thing. Everybody grieves in their own way and there's huge gulfs. My wife and I went through exactly the same thing and we grieve completely differently. Within the grief community, there's huge chasms between people who have had the same experience. I remember being in a parent support group with other parents who had lost kids and we were the only parents who knew when he was born that there was a possibility that he might die. Everybody else had lost a child suddenly and I looked at them thinking I cannot imagine what that's like that to me is. I can't imagine, but they looked at me the same way.

Speaker 1: 36:43

They were like.

Speaker 2: 36:43

I can't imagine, knowing that which son's born, that you might lose him. So the grass is always browner, I guess. The other thing is one of the nice things about having written this book that I hadn't expected when I wrote it. Remember, earlier in the conversation I alluded to the fact that once your child dies, suddenly this part of your identity is ripped out. Yes, it has given me permission to reconnect.

Speaker 2: 37:04

Obviously, I want to sell books. You should all buy the books but just the fact that I get to have this conversation with you, anna, and your listeners is a gift for me, right? Because it allows me to re-immerse myself in a land that I don't quite belong to. I know, I appreciate your point, but I don't quite belong to anymore my secret talent put an ng tube in a sleeping baby in the middle of the night without them waking up. That's completely useless to me now. There's no reason for me to bring that up now. Now I can talk about it. The third thing I'll say on this point is I met a wonderful woman, lee Camping Carter, who was born with the same condition, I know.

Speaker 2: 37:39

Born in the same condition as Nadav, she had the same three surgeries.

Speaker 2: 37:43

And she lived and I met her. She wrote this article in the Wall Street Journal. I reached out, I worked in New York Times, we had a reason to meet and I sat down with her and we looked at each other and she's like, well, why do you want to talk to me? I lived and I was sort of like why do you want to talk to me? Because am I not like the ghost of what could have been? And we had this magnificent conversation.

Speaker 2: 38:04

And I had never dreamed that first of all there was a community of adult CHD people who had survived these surgeries. They were always abstractions. To me To meet somebody who had actually done it was kind of mind-blowing, but it felt like the most comfortable thing in the world. And so you're right these preconceptions and how you sort of visualize yourself when this trauma happens is often far from reality, and I think that's one of the gratifying things since I published the book is learning that there are other people with other experiences and being able to communicate with them and that you still belong you and Tali, the children, you're all still part of our community, and I know it's probably hard to think about it, because that's what robbed you of seeing your child grow up.

Speaker 1: 38:45

But this is still a really loving community. But this is still a really loving community and we're doing amazing things. We are educating one another, we're inspiring one another, we're pushing the world beyond to find solutions so that we don't have to lose children like Nadav in the future. And part of the way that we do that is through our advocacy. And part of the way that we do that is through our advocacy, and this book is an attribution to the knowledge that is being gained. You share some amazing knowledge in your book and it's another means for our communities to say, hey, look at this, this is another newsworthy item. We exist, pay attention.

Speaker 1: 39:30

Why are you spending more money on childhood cancer than you are on CHDs? Start putting more money behind this so that we can eradicate congenital heart defects. I don't know if it's ever going to happen, but it will definitely never happen if we're not talking about it. So the fact that you wrote the book and that you're on the podcast talking about it is part of our efficacy effort. So thank you for doing doing that, and to that end, you have been on a lot of podcasts. I've really been impressed. I listened to your episode with Dr Robert Pass, who is amazing. He's been on my program before too. I just love you and your interview with him was absolutely excellent. But I'm wondering if there have been some specific topics or questions that nobody has asked you yet that you wish somebody would have asked you.

Speaker 2: 40:16

I don't know. I think I put it all in the book. And actually, anna, one of the cool things about writing a book is you get to see your experience through other people's eyes and they often notice things that you hadn't noticed. So maybe this is a bleak way of answering your question, but there are parts of the book that I just wanted to rush through. When I was writing it I was like there is no way this is interesting to anybody. Who wants to be stuck in the Children's Hospital of Philadelphia with us for six months. Right, who wants that? And actually one of the earliest pieces of feedback from a parent's group was that was the most fascinating thing for them is like how do you live in a hospital for six months?

Speaker 2: 40:49

And I had never dreamed that that was the case. This is why I encourage your readers to reach out. If they go to the website, they can contact me, and hearing what touched them about the book or things that provoke thoughts about it is also gratifying, because there are things that I hadn't realized were interesting that actually turned out to be quite interesting.

Speaker 1: 41:04

I love it. I love it. Well, since you've been on our brother podcast which is for you, but still me I had the opportunity to hear you speak with Michael Lieben, but I have spent this entire time talking to you and I have never said how sorry I am for an adopt's passing, and I didn't want to conduct this entire interview without letting you know that Now I'm going to start crying sorry. This is not that hard about what I do, so your story really did affect me and how sad it is that his life here on earth was so short. So, before I end, I would love for you to share one special memory that you have of nadav, something that all of us can hold on to, so that we can remember yourself.

Speaker 2: 41:51

Yeah, you read the book so you got to know him, and that's great. He would never have had a chance to meet you otherwise, so that's great. I mentioned he had curly blonde hair. I didn't mention that he was an old, wise soul. He was super smart. He loved to dance. He danced at his cousin's bat mitzvah, which was a really special, special moment. We went to a baseball game in north carolina in the sweltering heat and while his brother complained about the popcorn not tasting like the popcorn we had at home, he stood there in the aisle and he just rocked back and forth and did his own little jig while they were playing.

Speaker 2: 42:22

So that's one thing, but it's hard to encapsulate any life into one moment and hopefully I've done the job of the book of helping you get to know him and your listeners get to know him too, because he was a remarkable child and he was lucky to travel around the world and meet all sorts of interesting people, maybe not under the best of circumstances, but he was lucky to do that and the people who met him realize how lucky they are. And the fact that new people can meet him now as well means more to you.

Speaker 1: 42:46

Yes, well, I do feel like I know your family and I really enjoyed reading the book. Friends, please buy this book, share it with everyone as the librarian to buy it so more people can read it as well. What did we expect? The book was more than I expected. To be honest, it touched me in ways I didn't expect it to. Thank you. Thank you so much, james, for coming on the program today and sharing your stories and your experiences with us.

Speaker 2: 43:17

Thanks, anna, it's been a real pleasure.

Speaker 1: 43:19

It's been a pleasure for me too. Friends, I hope you enjoyed this episode of Heart to Heart with Anna. Don't forget to check out James Robinson's book More Than we Expected Five Years with a Remarkable Child, wherever you buy books, or check it out on his website, morethanamemoircom. The book touched me deeply and I'm sure it will touch you too. Until next week, my friends, remember, you are not alone.