366 – James Burch Of Grand Cayman, A Lawyer & Single Father of Three Boys, Including One With Global Developmental Delays

Transcript:

Tom Couch: Special thanks to Horizon Therapeutics for sponsoring the Special Fathers Network Dad to Dad Podcast. Working tirelessly to research, develop and bring forward medicines for people living with rare and rheumatic diseases. Discover more about Horizon Therapeutics mission at horizontherapeutics.com.

James Burch: You don’t know how to even process what has happened because in the space of 24 hours my entire life had exploded. Whatever was going to happen in the future, it was going to bear no resemblance whatsoever to the life I was living literally the day before. And I think to try and process that is impossible.

Tom Couch: That’s our guest this week, James Burch from Georgetown, Grand Cayman. James is a corporate law partner, amateur boxer and father of three boys, including one with global developmental delays. His is a truly compelling story. Being born in England and living the life in the Caribbean until he fathered a son with multiple disabilities and his world changed overnight. We’ll hear that story on this Special Fathers Network Dad to Dad Podcast. Now say hello to the founder of the Special Fathers Network and host of the Dad to Dad Podcast, David Hirsch.

David Hirsch: Hi, I’m David Hirsch, host of the Special Fathers Network Dad to Dad Podcast. Two short notes. First, I’d like to invite you to attend the 6th Annual SFN Dads Virtual Conference taking place via Zoom on Saturday, May 10th at 8am Central Time. We have a great roster of speakers and there will be plenty of time for breakouts to meet like minded dads who are committed to their children and self improvement. Secondly, the Special Fathers Network Mastermind Group Experience is the most comprehensive program the 21st Century Dads foundation offers. Dads raising children with special needs, meet virtually on a weekly basis and form meaningful relationships while sharing weekly wins, discussing books and sharing heartfelt challenges. One of the highlights of the year is attending an in person weekend retreat scheduled this year from September 5th to the 7th. As you think about the year ahead, I invite you to join one of the existing or soon to be formed SFN Mastermind Groups and join a group of like minded dads to become the best version of yourself. It might just transform your life like it’s done for so many others. For more information please go to the Show Notes or Simply go to 21stCenturydads.org.

Tom Couch: Now let’s hear this intriguing conversation between James Burch and David Hirsch.

David Hirsch: I’m thrilled to be talking today with James Burch of Georgetown, Grand Cayman, who’s a corporate law partner with Walkers, an amateur boxer and father of three young boys, including one with global developmental delays. James, thank you for taking the time to do a podcast interview for the Special Fathers Network.

James Burch: Thank you for having me.

David Hirsch: David, you and your ex wife Gemma were married for nine years before divorcing seven years ago and are the proud parents of three boys, Charlie, 10, Harry, 12 and Archie, 14, who suffered brain damage at the time of his birth and who has global developmental delays. Let’s start with some background. Where did you grow up? Me? Something about your family.

James Burch: Thanks, David. So I grew up in Cheltenham in England, which is which is in the heart of the Cotswolds, which is the sort of nice countryside that you see in all of the, all of the movies. When people think of, think of England, they tend to think of, of that area. I’ve got a brother, just one brother, he’s younger than me. He is actually a criminal barrister right now. So we both went into the law, albeit in in different directions. He feels that probably he’s doing God’s work more than I am. But nonetheless that that’s where we are. It was really just a very close knit family. It was just the four of us. We didn’t have really any extended family. It was happy childhood. My dad was into sort of various businesses. He went through a sort of rocky patch when I was very small and actually it was in one of the recessions. My dad lost his business, we lost our home and we ended up sort of moving into it, into a much smaller property. Both my brother and I sort of worked very hard to kind of get to where we are but you know, generally happy. I was very much into my sport, which was kind of strange because my family wasn’t sporting in the slightest. But I played football as you sort of mentioned at the beginning, got into boxing. I remember vividly watching the sort of big fight nights with my dad when they’re on the tv and just his excitement of the sort of sat on the edge of the sofa sort of bouncing up and down as the as the fight progressed and throwing the punches with the guys that really sort of stuck with me. And I just thought that whole, the whole thing, that whole environment really kind of inspired me. Little did I know I would be, you know, trying to do it myself later. At the time I didn’t think I would ever. But that’s really it. I went to university in the UK and shortly after qualification as a lawyer I moved overseas. It was always my passion to go and work somewhere other than the UK and I’ve effectively been away ever since.

David Hirsch: Yeah, well thanks for the brief flyby. I’d like to

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dig a little bit deeper as it relates to father influences. And I’m wondering what was it that your dad did or does for a living now?

James Burch: My dad is an author and after dinner speaker. He, had numerous businesses when I was growing up and I think actually that was. His mum instilled that in him because she, I guess, I mean, in her time the phrase wasn’t around, but I guess she was something of a sort of mini entrepreneur. she used to run all sorts of sort of smaller enterprises and flip them and all sorts of weird and wonderful things. So my dad was into various businesses. He had a sort of recycling yard way before recycling was a thing. He worked in sort of marketing, all sorts of different things. But when, when the business went over, my dad moved into consultancy, really starting off with kind of sales consultancy, going to companies and helping their sales force with, you know, customer service, what they want, how to sort of close the deal, I guess. And then that sort of morphed more into troubleshooting and bigger companies sort of got wind of what he was doing. He was quite alternative in his approach and that led to multinationals bringing him in to literally troubleshoot businesses, talk to their senior management, which led to books, which led to TV and all sorts of things. So he’s a little older now, probably slowing down a little, so it’s more sort of speaking engagements and he’s continued his writing, but all in the kind of business sphere. He always had the sort of the gift of the gab, I guess. And I think, yeah, that was always his passion. And, yeah, it led him all around the world and into the career he’s in now.

David Hirsch: So I’m thinking about lessons learned and you talked about the work ethic that you and your brother developed as a result of your growing up. And I’m wondering if there’s any other insights or lessons that you can take away from reflecting on your relationship with your dad.

James Burch: Yeah, I think so. It’s hard to sort of say what a traditional dad is supposed to be like, but we grew up in a very. We were very close foursome. And I think, and I mean, we can touch on it later, but I think a lot of that stemmed from my mum and dad’s experience themselves with their families. But we were very close. My dad was very engaged in what we did, was a very loving and attentive father. So we used to. We used to do a lot as the four of us. We used to go off on sort of random trips, random adventures. But he worked from home with My mum, so they’ve always worked together. My dad, actually, he was expelled from school. I don’t think he’d mind me saying. He was expelled from school and was always classed as a bit of a troublemaker. I think that’s probably what attracted my mum to him. He was absolutely the antithesis of everything that my mum’s parents wanted her to date. So, you know, he had the Triumph motorcycle and, you know, he was into all sorts of. Which obviously is pretty appealing. But it turned out obviously later on that he was very badly dyslexic. And it wasn’t so much the sort of the troublemaker thing. It was actually he was struggling with his schoolwork because of what would now. He would now get a lot of support for. And actually my brother also struggled greatly with dyslexia. So his sort of climb to his profession was a lot more difficult than others and he had a lot more support. But because of that, my mum and my dad worked together. My dad would effectively verbalize what needed to happen and my mum would. Would do the sort of. The written. The written part of it. And they worked from home, so they were always at home. So when we came home from school, they were there, so they were always around. And I think that that. That definitely impacted me on the way that I. Father. You know, we’re never in any doubt that we were cared for and loved and everything else. And I think that’s definitely impacted me in the way I. The way I try to parent my boys as well.

David Hirsch: Yeah. Well, thanks for sharing. I appreciate it. So I’m thinking about other father influencers and I’m wondering what, if any, influence your grandfather’s had starting on your dad’s side.

James Burch: I didn’t really know my grandfather on my. On my dad’s side, and as it turns out, neither did my father. M. My dad was always under the impression that he had the same father as his brothers and sisters. It turned out that that wasn’t the case later. And it was actually my mum who, I hesitate to say I uncovered it, but definitely sort of blew the whistle on it that my grandmother had always, since I was born and way before, years before, had lived with a guy that my dad just thought was a stepfather, but it turns out he was actually his father. That guy always scared me a little bit because I was always very small and he was very old and I’d be terrified of him. But he was actually a Viennese psychiatrist who fled the Nazis in the war and arrived in the UK and ended up in Cheltenham and met my grandmother. But because of, you know, the time that it was, and generally just the social, the social acceptance of those sorts of situations, it was kind of kept a secret and kept a secret from my dad until just before he died. Actually just after he died, when, when it all kind of came tumbling out when we were looking at sort of family photos and my, my mum basically picked up a picture and said, you know, you’ve got to tell him it’s the same person. And it all came out. And when we went through his papers, we found this incredible history that we suspect he was Jewish. We. Well, not 100% sure, but we suspect there’s a lot of papers of his extended family. Some

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James Burch: of his family went off to the concentration camps. We’ve, we’ve sort of tracked it back a couple to Auschwitz. So there’s a whole rich history. I mean, traumatic in, in some respects, obviously, but the whole history that we kind of missed out on. And I know my dad felt a particular way about that because he was always under the. Under the impression that someone else, a sort of absent father, was his dad and maybe explained why he was struggling at school when in fact his dad was, you know, had an incredible mind. But on the other side, my mum’s father. My mum was also adopted. Her adopted father was, he was a doctor. He was the local doctor in a, in a town called Gloucester, which is very near to. Near to Cheltenham. But he was probably the last of the true gentleman, the true British gentleman, as you would. You would understand it. I love that. And looking back now, I wish that I’d had some more time with him. He was a wonderful man and he definitely influenced me in many ways and was very encouraging of career and everything else. You know, they would show up at my sporting events and all of that sort of stuff. So he was very, very engaged and we spent a lot of time with them, particularly in some school holidays and everything else.

David Hirsch: Yeah, well, thanks for sharing. two dramatically different, role models, if you will, from a grandfather’s perspective. My understanding was that, you took your degrees there in the UK and you knew from a relatively early age that you wanted to go into law, but you didn’t really follow one path into the law. So why don’t you, reflect on that?

James Burch: Yeah, sure. I ended up picking law at sort of 14 or 15, doing work experience with a local solicitor. And I actually wanted to be a very sort of crusading lawyer. I wanted to work in childcare law. I’d done Some work experience. I’d worked in the family law department of, a large firm near us.

David Hirsch: So you’ve worked primarily for two large law firms, international law firms. Maples, your first employer, and then Walker’s. And I’m wondering if you could just briefly describe the work you’ve been doing.

James Burch: Sure. Well, prior to running off to the sunny Cayman Islands, I actually worked. I worked in Hong Kong for a firm called Johnson, Stokes and Masters. Now, Mayor Brown, who you’ll be familiar with in the US that, again, an opportunity came up post qualification, no experience sort of required, but can you come out and help with the restructuring work? Sort of. Following the Asian flu and the recession that hit there. Having never been to China, ever, I found myself at Heathrow, heading off to Hong Kong. I spent three really happy, happy years there. And then I moved back to London with Linklaters, who, are one of the top firms in the world to do structured finance. I did almost four years with them. And one winter’s day, on a commute with my face pressed against the glass of the tube because it was so packed, I saw an advert and had a picture of a palm tree on it, basically saying, would you like to come and work here in the Cayman Islands? Which My answer was 100% yes. And within six months, I joined Maples in the Cayman Islands. I spent eight years with them. I opened their, Singapore office and worked for them in Hong Kong as well before heading back to Cayman 10 years ago with Walkers. Both incredible firms. Gave me a huge amount of experience, not only with regards to the legals, but also managing people, opening offices, marketing, business development. It definitely laid the foundations for me and my career. On joining Walkers, I was sort of tasked with building a practice and it’s just. Yeah, it’s been fun. It’s been a fun ride. And I’ve, sort of, you know, climbed my way up, up the ladder to where I. Where I sit now.

David Hirsch: Yeah. Well, thanks for sharing. some, pretty amazing travel experiences that you’ve. So let’s switch gears and talk about, special needs. First, on a personal level, and I’m wondering, prior to Archie’s birth, did you have any connections to the world of disability or special needs?

James Burch: No. No, really, I really didn’t. I guess you could rack your brains and find out examples and remember, sort of friends of friends or distant family members that were struggling. But no, there’s no direct impact on my life. I didn’t really experience it or have close connections with anybody who, who was going through Similar struggles. So, when it happened to me, it certainly was, it was an eye opener.

David Hirsch: So what is Archie’s diagnosis and what’s the backstory?

James Burch: So Archie has been diagnosed with global developmental delay. It’s a processing issue in his brain that impacts short term memory. And also the way that we as sort of human beings organize things in our brain to work out the order of things. If you’re doing a maths puzzle or you’re doing maths at school, the order that you should follow, that you remember, the way it goes. Even sort of getting dressed in the morning, you know, your shoes will go on last. The way Archie’s mind works is he isn’t able to recall the order of things. So every day he will approach things slightly differently.

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James Burch: As a result, he really struggles to. His learning is impacted because we tend to learn by way of repetition. And whilst Archie will eventually effect does get it in the end, with constant repetition, constant reassurance, constant reminders, he finds it very difficult to pick something up on a whim. So if you told him something, gave him an instruction, he would be able to act upon it. But if you told him the same thing again or in 20 minutes, said, do the thing that I told you to do 20 minutes ago, you would struggle. It’s quite subtle in a way, to an outsider who just meets him briefly, he’s become sort of very good at sort of managing it and mimicking and being quiet when he needs to be quiet. But you’ll start to clock it that the same questions will come up. He will constantly ask the same thing as a reassurance, as a. Just a reminder. so it’s a very difficult thing for him to manage going forward. Because if you think of sort of almost any profession, there’s a lot of things that once you have the grounding, you will apply it and you’ll repeat it. Even if you think of a sort of a chef, even just cooking one dish, once you’ve done it 100 times, you’re going to do it. For Archie, it would almost be like coming to it afresh every day. And actually one of his specialists gave quite a nice take on it and said, yeah, it’s upsetting. You know, you, you worry about what happens in the future. You worry about, you know, the older he gets and the more aware he becomes of, you know, the differences he has and the more difficult it is. But it’s kind of a nice take. And said, well, just imagine you, you know, you wake up in the morning, you worry about things Happened to you three weeks ago. You. You sort of live in fear sometimes of work of, you know, what’s coming over the next two weeks. You know, the dramas. You can’t sleep because you got something on your mind. Archie wakes up and is pretty chirpy because if. If he has a bad. You know, if he has a bad day, the most of it’s gone by the time he wakes up in the morning, he. He remembers the things that he’s repeated. He’ll know, you know, when he’s got school, he’ll know the sport that’s on. But a lot of the bigger stuff that weighs us down as humans, Archie kind of breezes through and I thought, it’s kind of a nice take. It’s nice to take a positive from it in a way. What happened was, as with a lot of these things, problem at birth. Archie, unbeknownst to us, had a heart defect, which, effectively, one of his valves was completely closed. It was sealed. Probably should have been identified in one of the fetal scans, but wasn’t. As a result, when he was born, he was starved of oxygen. There was a mess with the delivery. Gemma ended up having an epidural and Archie sat in the birth canal for a long time. Basically slowed the whole process down to the point that he was. He was struggling. You know, hindsight being 20 20, he should have been in a specialist hospital. He should have been a Caesarean. So when he was born, and if you can imagine, we were in Cayman, it was 14 years ago. Cayman’s a lot more advanced than it is now. Nobody was prepared for what it was. You know, every normal birth was all fine and came in and you’re fine. But this is a true crisis. It needed specialist care and there wasn’t any. And panic ensued. And Archie. Archie was blue when he was born and he was unresponsive. They thought he’d had seizures when he was born. We’re not sure whether that was the case or not, but one of the things that you do when there’s been potentially a traumatic brain injury on birth is you basically freeze them because it stops the damage, or certainly slows the damage down. So Archie was put in a plastic case that was just filled with ice and effectively frozen whilst people tried to work out what was going on. And actually, it was one of my friend’s wives, who’s a pediatrician, had just popped in on her rounds when Archie had just been born and saw, the drama and came back later that night because she had a suspicion that it was actually heart related. Rang Miami Children’s Hospital to try what was quite an experimental and potentially risky procedure, which was injecting Archie with a. With a certain, certain drug that would keep a little tiny hole in his heart open to allow the flow of oxygenated blood that normally closes on birth. She did that and saved his life. I mean, without that, Archie would have died that night. So obviously we’re forever in her debt. And she also then got on the phone to a number of partners who had to sign off on the emergency flight going in. So she hustled someone from their bed to get a flight, signed off. And off I went with Archie, 12 hours later to Miami Children’s Hospital on the, evacuation jet. So I. I’d been at home. I got sent home when Jem, they said that Gemma was going to take a while. They, were juicer, but, you know, it wouldn’t be until the morning. So I got into my bed in Cayman, in my apartment, got a call at midnight that it was all happening, got out of bed, and I didn’t go back to Cayman for three years. So literally the covers were thrown off, I stepped out of

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the house, and that was it. I didn’t go back. I hadn’t. I had nothing with me. The clothes I was in to the hospital were the clothes that I flew in, with Archie to Miami Children’s. So we landed at Miami Children’s Hospital, which obviously is the specialist hospital. Went to the NICU unit and they didn’t know what was wrong either. And given that that hospital deals with children born with sort of half a heart, hearts backwards, and every other terrible thing that can happen to a child. We were told that, or I was told that Archie, was the sickest child on the ward, which was a bit of a hammer blow. They started to treat him. But then I had the sort of conversation that, you know, obviously no parent wants to have, which is, you know, there’s very little hope here that he. He was a very sick baby and was effectively dying and to sort of say my goodbyes and to basically get in touch with everybody I could. Gemma hadn’t been able to fly because of the birth, so she was still in Cayman, beside herself, obviously not knowing what was going on. And I was basing into these conversations and it’s just a blur. I mean, you don’t know how. You don’t know how to even process what has happened because in the space of 24 hours, my entire life had exploded from whatever was going to happen in the Future it was going to bear no resemblance whatsoever to the life I was living literally the day before. And I think to try and process that is impossible. You stand and you listen to the words and you just don’t really know what to do. And I think Hack his podcast was very moving because I’m sure it’s literally almost like a script for all those parents end up in Miami Children’s. The promises you make to have a God or how spiritual or whatever you believe. And even if you don’t at that point you will say what you need to in the deals you make. I made very similar deals myself. There’s a, there’s a room so I’m sleeping by his bedside. But there’s a room in Miami Children’s that you get sent to. In the end you get moved out of the room. And it’s, it’s just in the daytime it’s just a load of armchairs and at nighttime they fold into beds. And it’s for the parents who are with very, very sick children in the NICU. And normally it’s the parents who have had the bad news I’ve had and you’re just waiting to be sort of roused to get the bad news. In that room there’s probably, there’s probably like 15 or 20 of us and nobody’s talking, nobody talks to each other. Everyone looks pretty shell shocked. And you lie on this kind of single sort of fold out armchair. And it’s the strangest. There’s an air of incredible calm in that room because I don’t think you can ever replicate the silence of the thoughts of everybody in that room. That it’s a different. So it’s not just people being quiet, it’s a different sort of still. And you know, everyone is asking for the same thing and making the same, same deals. So when Hackie said that that’s what he was doing, it was, it really hit home because I remember very clearly just lying on a bed, you’re not sleeping, obviously you’re not, you’re not asleep. You’re. You either get someone come and get you, which is not a good sign, or you wait to the, the dawn and when the sort of, you know, the coffee cart opens and you know it’s time to go back and, and back you go. So anyway, Archie was, got stabilized. They found the problem with his heart. They started to defrost him, literally defrost him. Realized they had to get his valve open. So he had, I can’t remember the official name, but effectively It’s a catheterization where they put a balloon up through the valves in your heart. They open the balloon, and oftentimes it sort of pops open the valve, literally. So they tried that. It didn’t work. And that was within the sort of first 48, 54 hours of US being there. And at that point, we ran out of insurance money. So again, another conversation came along the lines of, we’ve got to do that operation again. It’s costing $6,000 a day for him to be in the bed without any medication. He was on 50 different sorts of drugs. Every time they did an echo, a scan, it was three or $4,000. And each operation he had to have was $80,000. And we didn’t have insurance cover because we’d blown it in three days. So it involved us selling everything we had, raking in everything we had, borrowing to get a fighting fund to sort of last for another month. And again then it was at that point, and by this time Gemma had come over. They felt there had been some serious brain damage. So we went off to the neurologist for a test, and they put effectively, a sock on Archie’s head with huge number of wires. It almost looks comedic. It’s like something from one of those movies in the 80s, like Weird Science or whatever it might be. This thing

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with wires everywhere and it’s tied up to a screen. And so we stood at the screen looking, and it was just black, like it hadn’t been turned on. And the neurologist is tapping away and doing things and clicking buttons and everything else. And this was going on sort of 15, 20 minutes. And we said to him, well, when does it actually start? When do we turn the screen on? And he said, it is on. There is no brain activity whatsoever. You’re supposed to see this absolute sort of scramble of lines and squiggles and like static on a tv, things going everywhere. It was on and it was blank. And, you know, he said, basically, that’s it. You know, that. That is it. that said, you know, even if he survives, which is very unlikely, he wouldn’t be able to walk, talk. You know, there’d be no. 0 quality of life, that it would be 24, 7 care forever. Which I think is at that point the proper sort of meltdown came. That everything, the tiredness, the whole trauma of the whole event. It’s. It’s funny. People will always say, and obviously everyone. Everyone is supportive, and it’s hard to know what to say. But, you know, after the event, I don’t know how you did it. You know, you say it’s lots of people who’ve been through things. It’s like, I don’t know how you did it. You do it because it’s like drowning. You know, you step into the ocean, you get swept out, and you just have to keep your head up. There is no. There’s no doing anything. There, is no skill set. There is no inner strength. There is no mindset that can be adopted. The thing is like a roller coaster. Literally, you’re strapped in, you’re taken to the top, and then you’re gone. There’s no control there. You just have to ride it till the end. And that’s kind of what it felt. And I think that was the time where you can’t help it, but you sometimes feel a little bit selfish in those moments because obviously poor Archie is lying in this box. His brain isn’t working. He’s had a heart operation. He’s on a million and one drugs. God only knows what, you know how he is feeling, and you have the thoughts of 24, 7. For the rest of my life, my life is going to be spent caring for this child. You know, a week ago, we were walking the beach in the Cayman Islands, expecting our first child. Now I am, have zero funds. We’re in debt. My kid is effectively dying. What has happened here? And that was the worst time for us, where you just can’t process what’s happening in the moment, what’s coming down the track. And we were in that sort of state for about a week. They did another brain scan, and there was a tiny little bit of activity, but again, nothing much. And we got very upset in that particular scan. It was. It was horrific. It was horrible. And, you know, I appreciate, in a way, the way that the neurologist delivered the news. Very matter of fact. I mean, every word was like a hammer blow. But you can’t sugarcoat something like that. I wouldn’t have expected him to, but it was. It was very, you know, it is this. It is this. This is this. And we were pulled to one side in the end by our, heart surgeon, the guy that had looked after Archie and done the operations. And he said to us, look, I think we’ve kind of got him stable now. The good news is he’s going to live. I’m sure he’s going to live. And he said, the thing with the heart is, he says, we know what Archie’s got. We know how it can be fixed. And as difficult as it is to fix. So we’ll fix it. It’s like plumbing. We understand water in, water out. This pipe needs to go here, this pipe needs to go here. This bit needs replacing. So with neurology, we don’t understand. He said, even the greatest neurologists in this hospital doesn’t really know how the brain works. We don’t know how the brain works. We are best guessing at, what we think is going to happen, but we aren’t really sure how the brain rewires. We aren’t really sure how it develops. And he said, you know, I’ve seen kids with full brain activity, absolutely fine, have a very poor standard of life in the future. Something horrible happens. He said, I’ve also seen children like Archie live very full, happy lives. He said, my suggestion to you, as somebody now who is telling you that, Archie is going to be in your life forever and you’re his parents and you’re going to love him, is don’t bother with neurology anymore. Literally, just face into each day as it comes. Whatever challenges come, you’ll, you know, you’ll deal with them. but when it comes to matters of the brain, we’re only guessing. We, we don’t know. And that was that stuck with me forever. It was a doctor called Dr. Rossi. So if he ever hears this, thank you, Dr. Rossi. But we said, okay, we just stopped. And in those moments, you’re feeling very sorry for yourself. I think now if I could go back in time and see the James and Gemma that were stood in that room there with Archie now, it would be amazing. I don’t think I would believe it to say, well, this is Archie now. He’s sporting his football team, doing this, playing this sport. He’s huge. He’s a big 14 year old boy. Being a typical teenager who will be really annoying you because of his teenage ways, you wouldn’t believe it. In

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that moment, you genuinely wouldn’t believe it. So we’re actually blessed. I mean, it’s a bullet dodged, it really is. And maybe in that moment you don’t feel like it. Maybe you feel like you’ve been hit firmly between the eyes with such a bullet. But there are parents that we were with who were going home without their babies and parents who are still going back to that hospital. I think if you want to be humbled at any point, just go to the coffee shop in Miami children’s hospital for 15 minutes and I guarantee you, no matter what your situation, you’ll be leaving. Being very thankful for where you’re at and the hand you’ve been dealt. So I think it’s a positive story in the end, but in that moment, yeah, I mean, it’s unbelievable. And the story sort of ends with us, facing into open heart surgery with Archie. We obviously didn’t have any insurance. The operation was in the region of $3 million, I believe, in the US. We were told that we may not be able to fly, so I rang the QE2, which was the only way I could think of getting from the US to the UK was by boat. but Archie was too young to travel on it. And again, Dr. Rossi kind of came to the rescue and said, look, I think from a heart perspective, if you can get a doctor to fly with you, put Archie on oxygen, you can probably make it. And that’s what we did. We flew a doctor out from the UK with our, literally our last, last bit of cash. And, we flew back from Miami to London. Archie, ah, went to Great Ormond street and they were spectacular in their care of Archie. The NHS has a difficult time and often gets criticized, but in these moments of crisis, in these big, big medical dramas, they are actually unbelievable. And Archie had open heart surgery when he was nine months old where they took the valve out. So he doesn’t have a valve in his heart anymore. We’re going to be facing into another open heart surgery maybe this year or next year, because now he’s older, he’s not actually as resilient, starts slowing down. It’s effectively just the lack of oxygenated blood going around his body, and you can see it as he plays sport, that he sort of gases quite quickly. So we go back every year and either this year or next year, they will take him in for another round of open heart surgery where they’ll put a valve back in. But in that time period from nine months to 14, we’ve effectively had a very robust, happy boy, despite the neurological issues that we’ve had to face. We’re actually incredibly lucky, which seems an odd thing to say, but we really are.

David Hirsch: Well, that was a breathtaking story, James. Thank you for, recalling it. It’s not lost on me that Archie’s your first. Right. You didn’t have any other points of reference and you’d mentioned that, you’d left. Right. Within 24 hours you were on a plane evacuate to Miami and then eventually back to the UK.

James Burch: Yes.

David Hirsch: And, it just seems like a surreal experience that you’ve just described that you just picked up and left. Right. And in the interim, you incurred these huge debts, right, that seemed, like it would be mind numbing to process, but you were just going to give everything you had to see, you know, if you could save his life. And maybe now, like you said, you can look back on it and say, hey, we would have never believed that, Archie would be living the life that he is. so, you know, looking back on it, it’s like, wow, what a miracle. But how is it that you were able to stabilize your life? Did you have to, like, get a new job or how did that all work?

James Burch: Yeah, it was, we were actually due to. Or we were in talks to move to Hong Kong. So I was at Maples at the time in Cayman, and we were in talks to go out to the Hong Kong office. And, they were expanding that office. I’d obviously been there before, and one of my good friends who was a partner there had just moved out and asked if we would think about going. And we were in conversation about that. I was kind of keen to go. Gemma, kind of less so, was very settled in Cayman, but we, you know, we thought it was a good career opportunity. So, yeah, that’s where we were. And I remember vividly one day, about a month before she was born, walking on Seven Mile beach and just having this feeling of. There’s no smugness or arrogance about it, but it was just like, wow. Like, things are, things are good. Like things are good. And, we’ve got this great career opportunity. Live in the Caribbean, work’s going really well. Back to have my first child. You know, life is pretty good. I think if there’s ever a lesson that life can turn around and bite you in the ass, it’s probably that because as I say, everything, everything in an incident was turned upside down. We’re in Miami for three months, then we’re back in London living with the in laws, which, you know, that’s a nightmare in itself, let alone in a. In a. In a crisis,

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James Burch: not knowing about where to work. Maples are very good. They let me work in, in the London office. But actually, after a couple of months working in London and the pressure of the job and actually wanting to do a good job, for a good job for my clients and for the firm, it was clear I couldn’t juggle both. I couldn’t have the sick baby at home and then commute into London and do the job. So I resigned. Then they actually gave me effectively unpaid leave to go away for a few months and take Archie through the operation. And In a very odd way, that was probably one of the happiest periods of my life because I had this sort of doomsday event sort of on the horizon. But in the meantime, you had nothing to do but to just be with Archie and not have to deal with work. And it was actually, through a sort of summer in the UK. It was, it was nice and sunny and just got in this routine of wheeling him up the road, getting a coffee, wheeling him back. And actually that’s where the boxing really started in earnest. Because at the end of the road we lived in southeast London and at the end of the road there was this very dodgy looking boxing shop. and I was very into boxing and someone said, oh, it’s not just a shop. Behind the shop, there’s a boxing ring and bags and there’s like professional fighters in there. I was kind of too nervous to go in for a while because it did look pretty terrifying. But I did, I stepped in, met the older guy, who is actually my soon to be friend’s father, and asked if I could do some, some training. And he said, sure, you, but you can train with my son. I was like, oh, who’s your son? He said, oh, he’s the English champion. He’s just actually cutting weight for a fight. And he sat over there and he pointed me to the most aggressive, miserable, angry looking man I’ve ever seen in my entire life. And I said to him, I don’t want to train with your son. I’d really rather not. And I was told, well, you are. And that guy was a guy called Ryan Barrett. And I started training with Ryan. he found out about what was going on with Archie and he and his family basically sort of took us under their wing instantly. And again, another thing coming out, the Archie thing, you know, we just became best friends. Ryan ended up winning a world championship belt, but then him, he himself had a stroke following a very hard fight, so went through his, his own battles. But yeah, in that period of time, you know, I met Ryan, I had a lot of time with Archie. We did the operation and it went very well. And back to your original question of how do we get life back on track? And I, I am not sure if this is the right way to do it. I think in hindsight, looking back, I think we probably needed to better process what had just happened in that year. Instead, I think what we decided to do was we’re going to ignore that year, we’re going to write that year off and almost pretend it never happened and we’re going to start again. And so we packed up and went to Hong K, as we had always planned, to effectively pick up where we left off. It felt like the right thing to do at the time. Everything’s good now. We’re going to just crack on now. Sat where I am. It wasn’t the right thing to do actually. The thing to do was to literally face into that year that had just happened and actually deal with what had happened, what the future looks like after something like that. You can’t block it out, you can’t pick up where you left off. There is no leaving off. Your life has changed. Even relationship with money, the fact that how much went in such a short space of time. Money comes, money goes. It really, really does bring that into sharp focus too. Like you say, I would have given anything, anything in that moment to make it right. Anything. If anyone is in a similar position, I would say that turning around and facing into it with the sort of positive news that you’ve moved away from the real dark times, the. But turning back into it and actually reliving that journey and processing it is should have been what we did, but we didn’t. We decided to crack on.

David Hirsch: Yeah, well, you can only look back with hindsight and maybe see that situation. You know, you did what you felt like you needed to do at the time and obviously, there’s alternatives and maybe you didn’t evaluate, that alternative. But, but one of the most relevant things you’ve said, and I think I’ve got myself saying this, is that we’re all, literally all of us, all 8 billion people on the planet are either a heartbeat or a step away from experiencing disability or experiencing a dramatically different situation. Probability isn’t very high, but it does exist. And when you find yourself in that situation, you can’t predict how you react to it. Right. There is no preparation, there is no like skill set, you know, that you have. You’re just going to be sort of relying on your instincts, right? And maybe part of that is your education and life experience to be able to deal with hardship like you’ve just described. But you know, 14

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years ago that was a death defying situation that you’ve just described. And there’s a lot of positive things that have come out of the circumstance. And you know, most of which is Archie. While he might have his challenges and you know, he’s the equivalent of the 50 first dates type of person, right? You know, it’s just like you’re like hitting the reset button over and over and over. and that’s not the worst thing either, like you said. Right. You know, he’s not going to be worrying about some of the things that a typical person would be worrying about. And if you can continue to help him improve his recall and his ability to function on a day to day basis and maybe find something that would, he would be perfectly suitable doing. Right. From a occupational standpoint, he’ll continue to enjoy, ah, a higher level of independence than anybody would have imagined from that extraordinary, traumatic experience that brought them into this world. And I, think it’s exciting. Right. I don’t know that anybody would trade places with you logically. But, you know, there are some lessons to be learned, not only the ones that you’ve already shared, but, you know, there’ll be lessons to be learned going forward as well.

Tom Couch: We’ll be back with more of the conversation on the Special Fathers Network Dad to Dad Podcast in just a few moments. But first, this quick message. Please help 21st Century Dads gather research on families raising children with special needs by having them complete the Special Fathers Network Early Intervention Parents survey. A link to the survey can be found in the show notes. As a token of our appreciation, each person, mom or dad, who completes the survey will receive a great dad coin. Thank you. Now, back to the conversation.

David Hirsch: I’m wondering not to reflect on the negative, but, what impact has Archie’s situation had on, his siblings or extended family?

James Burch: That’s a very good, it’s a very good question. The brothers fight. I mean, we were having breakfast this morning and someone clonked somebody else and this whole thing erupted. And it’s 6:30 in the morning and they’re not in their uniform and there’s a brawl going on and there is shouting and we’ve had the neighbors round to sort of complain about the noise from the boy. It’s, it’s, it’s a typical sibling relationship. As I’m trying to break up this brawl whilst, shoving toast down their neck and trying to find somebody’s shorts. It’s kind of, that’s my morning. But I think when you step back and you look at it because they’ve grown up with it, Archie leans a lot on his brothers and his brothers respond in kind. They get frustrated with him and they say things to him are like, archie, I’ve already told you this. But because it’s their norm. It is, it is very much their norm with him. And, and Archie is, he won’t ever Admit it, he’s very close to his brothers, especially Harry, who’s the middle one, who’s kind of the leader. they are patient. They don’t realize that they are patient, but they are very, very patient with him. They explain things. And Archie follows them, sometimes blindly, which is terrifying, but follows them where they go, and they provide that comfort. One of the parenting problems you often have, you obviously often rack with guilt, is, am I doing the right thing? Am I giving him enough support? Am I doing this? Am I doing that? And as a specialist comes to Cayman every, few months from the States, and we’re talking to her about, you know, should we move back to the uk, Should I put him in some special, school? And her point is, with what Archie has, yes, you know, maybe some really ultra specialist care, we could improve performance by 5 or 10%. But actually, what’s more important to Archie is familiarity and comfort. He’s very used to Cayman. He knows the school run, he knows where we go, he knows the restaurants. He’s got friends moving him out of that. Like when we go on holiday, if we go to a big city, you can definitely feel the nervousness, and he’ll be very close to me. The importance of his brothers are they just provide that consistency for him. They’re a crutch for him. When they are around, he doesn’t feel as. As nervous, he doesn’t feel as wary of things, because if his brothers are okay, he knows that he’s okay as well. So they’re very important to him. Even though they annoy each other, they look after him and he allows them to. It’s actually quite sweet at times to see it. The boys jive at each other all the time. The brothers know to steer clear of any sort of jive with regards to being stupid, being dumb, anything like that. That doesn’t happen because that is taken to heart. And Archie does get emotional with things like that. You can see it. And he is starting to struggle with it and question what’s coming, what’s going on in the future. If I can’t do this, what am I going to do? That’s really tough to look into because really, the answer is, I don’t know either. I have never known with Archie. I have no idea what the next week, year, two

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James Burch: years looks like. We’ve lived in fear for a lot of it sort of emerged from that. I don’t know. It’s part of, I guess, to your point, the excitement of the journey, because who knows? But it’s also something that will keep me awake at night because I’m just in this position. I, I don’t have any qualifications to be in it. I get frustrated too. And I think you maybe you’ve got the same experience with other dads who are dealing with family members with similar issues. I’m on the journey with Archie. I don’t know what’s going to happen. He doesn’t know what’s going to happen. I try and comfort him that everything will be okay. Who knows? Who knows? And I think that’s the tough part, right now.

David Hirsch: Yeah. Well, two thoughts come to mind. They’re not solutions, but just things to consider is one, he’s probably going to need some, therapy, right, Just to be able to deal with his situation, right?

James Burch: Yes.

David Hirsch: Up and above, you know, the tutors and everything else that, you know, might be available to help him with the day to day. And, that’s not out of bounds, right? There are professionals that help people. it might be difficult there in Cayman to find somebody who has had a, another client or clients with a similar situation to Archie’s. But, you know, there might be online people, that have, been able to help others with a similar situation to Archie’s. And again, he’s an adolescent, he’s a teen. Right. There’s the hormones that are starting to rage, you know, and it’s hard to separate out, you know, what is just the normal developmental stuff compared to, you know, some of the other things that he’s dealing with. So, you know, I don’t envy you in that situation. And then, separately, what you talked about is the support that Archie may need, right. You know, beyond, you know, the other boys as they develop and become more independent. Because you don’t know what Archie’s situation is going to be. You don’t know what level of independence he’s going to be able to enjoy. And the idea of estate planning and special needs trusts and, you know, just doing the responsible thing, to make sure that, you know, beyond your being there. And let’s hope that that’s for decades and decades to come. But hey, nobody knows, right? you’re a boxer, right? You’re having somebody pound away at your head, right? You know, crazy things happen. So, you know, there’s some things that we could each be doing, right, that sort of button our financial situations up to make sure that our kids are provided for. And you’ve done a really good job to this point. And I don’t think you need to question yourself about continuing to make the right decision. You know, there’s only one way you can connect the dots, which is by looking backwards. Anyway. So, yeah, don’t sweat all the decisions that you’re, going to be anticipating today. But, I’m thinking about advice now and I’m wondering, what type of advice, beyond the scope of the conversation that we’ve had, would you give to a dad who finds himself in one of those unpredictable, you know, scary situations like you found yourself in?

James Burch: It’s a very good question. And having been in that position and being given advice whilst in the moment, and then after, there is no specific advice or words that are going to, when you’re in that moment, get you through it, other than just literally buckle up and the momentum of the events, as traumatic or as horrific as they are, will move at their pace and the direction they’re going to move. And you just go with it. I think it’s inevitable and it’s human nature that when something is moving in a direction you don’t want it to go in, or it’s news you don’t want, you’ll dig your heels in or you’ll try and shift the direction, you’ll try and shift the momentum to go back to being swept out to sea. Story. The one thing they say if you get swept out is not to fight against the current. Don’t paddle. Actually, if any else, go further out with it. Go further out with it. Let things calm and then paddle your way back in. And it might be a very long paddle and it’s going to take a long time, but you’ll get to shore. If you fight against that current as it’s raging against you, it’s going to sink you. And I think that is the best advice I can give to anybody is you’re in it, you’re being swept out. There is no, as I said, there is no mindset. There is no real skill. People aren’t better than you at it. None of us know what’s going to happen. Sweep with it. Sweep with it. It’s your child. You’re gonna love that child. You’ll do it. You’ll do it. Yeah, don’t fight it. Just. Just see where you land and then slowly paddle yourself back. I think is the advice I’d give anybody good advice.

David Hirsch: So I’m sort of curious to know why you’ve agreed to be a mentor father as part of the Special Fathers Network.

James Burch: I would really love to help someone in a similar position to me because I have no special skills I’m just genuinely just a normal guy who walked into an absolute, you know, storm basically, for one, for better word, and have sort of popped out the other end with my life not looking anything like, anything like I thought it would. But here I am and I have rebuilt. I did drag myself up from rock bottom. You can do it. And I would love to just try and help any father that’s in that position. I think quite rightly, mothers get a lot of support and there’s a lot of resource out there for them. Being a dad, I never thought I would be in this position, but looking for things specifically that deal with the father’s position, particularly single fathers or fathers who are co parenting, there’s very little, there’s very little there to help. We say there’s no rule book, there isn’t. There’s no instructions. But talking to somebody who’s been through it, I think you have to speak to somebody in it. And I would love to be able to do that both for my benefit too. I think I could offer, offer a lot to just help get through. And don’t try and be perfect either, because there isn’t. Perfect doesn’t exist. Just. Yeah, being a dad is, is a tough, tough gig.

David Hirsch: Well, we’re thrilled to have you. Thank you for being part of the network. Is there anything else you’d like to say before we wrap up?

James Burch: No, I think, just to appreciate the work, the work that you’re doing and even just being able to speak to you and on the podcast is quite cathartic. I think sometimes when you’re in this position, man or woman, mum or dad, you sometimes can feel overlooked. And I think those moments when you’re on your own and you’re facing into what people face into with especially neurodiverse children, it can be a lot. You can feel very alone and kind of unsure of what the future holds. And I think the work that you’re doing with this network and other charities is absolutely vital in just providing a resource and shoulder to people. So I just like to say thank you to you for doing that because it obviously resonates with me greatly.

David Hirsch: You’re welcome. And, it’s not lost on me that your first professional boxing match is scheduled for mid may, 2025, here and in of all places in Columbia. like Columbia, Missouri for those dads here in the States. But Columbia, the country. So we’re going to be cheering for you. And if there’s a will, there’s a way. I’d love to be present to experience that from the sidelines.

James Burch: I’d love you, love you to be there. Maybe you could do a live podcast with, with commentary. We’ll have hackie on, on co comms.

David Hirsch: Well, let’s give a special shout out to my daughter, Emily Hirsch, who, works at Walker’s for helping connect us.

James Burch: Yes, thank you, Emily.

David Hirsch: If somebody wants to learn more about your work or to contact you, what’s the best way to do so?

James Burch: They can, they can email me directly at Walkers or I’ll provide you my personal email and I’m happy for you to, to hand that out. I would always be available to speak to anybody on any of these, any of these topics. I’d be more than happy to.

David Hirsch: We’ll be sure to include that information in the show notes so it’ll make it as easy as possible for somebody to follow up. James, thank you for your time and many insights. As a reminder, James is just one of the dads who’s part of the Special Fathers Network, a mentoring program for fathers raising a child with special needs. If you’d like to be a mentor father or are seeking advice from a mentor father with a similar situation to your own, Please go to 21stcenturydads.org thank you for listening to the latest episode of the Special Fathers Network Dad to Dad Podcast. I hope you enjoyed the conversation as much as I did. As you probably know, the 21st Century Dads foundation is a 501c3 not for profit organization, which means we need your help to keep our content free to all concerned. Would you please consider making a tax optimal contribution? I would really appreciate your support, James. Thanks again.

James Burch: Thank you, David.

Tom Couch: And thank you for listening to the Special Fathers Network Dad to Dad Podcast. The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs. Through our personalized matching process, new fathers with special needs children match up with mentor fathers in a similar situation. It’s a great way for dads to support other dads. To find out more, go to 21stCenturydads.Org.

David Hirsch: And if you’re a dad looking for help or would like to offer help, we would be honored to have you join our closed Facebook group. Please go to Facebook group facebook.com groups and search dad to dad. Lastly, we’re always looking to share interesting stories. If you’d like to share your story or know of a compelling story, please send an email to david@21stcenturydads.org.

Tom Couch: The Special Fathers Network Dad to Dad Podcast was produced by me, Tom Couch. Thanks again to Horizon Therapeutics who believe that science and compassion must work together to transform lives. That’s why they work tirelessly to research, develop and bring forward medicines for people

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David Hirsch: living with rare and rheumatic diseases. Discover more about Horizon Therapeutics at horizontherapeutics.com.

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