When Ted Yang learned his wife was pregnant, life felt amazing! He was married to the love of his life, had a fulfilling and lucrative career, and was expecting not one but three babies. But his world was turn upside down when he found himself facing the reality of premature birth, one infant loss, and two premature babies fighting for their lives. His experience as a loss father left him feeling alone in a society which fails to adequately support mothers of loss and premature infants, let alone fathers. Ted tells his story today in hopes of inspiring more fathers to come forward, to share, and to inspire hope and healing for those coping with the life-long challenges of overcoming prematurity and grieving the loss of a child. Ted Yang If you enjoyed this episode of the Down To Birth Show, please subscribe and share with your pregnant and postpartum friends. Between episodes, connect with us on Instagram @DownToBirthShow to see behind-the-scenes production clips and join the conversation by responding to our questions and polls related to pregnancy, childbirth and early motherhood. You can reach us at Contact@DownToBirthShow.com or call (802) 438-3696 (802-GET-DOWN). We are always happy to hear from our listeners and appreciate questions for our monthly Q&A episodes. To join our monthly newsletter, text "downtobirth" to 22828. You can sign up for Cynthia's HypnoBirthing classes as well as online breastfeeding classes and weekly postpartum support groups run by Cynthia & Trisha at HypnoBirthing of Connecticut. Please remember we don’t provide medical advice, and to speak with your licensed medical provider related to all your healthcare matters. Thanks so much for joining in the conversation, and see you next week! Support the show (https://www.paypal.com/paypalme/cynthiaovergard)
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When Ted Yang learned his wife was pregnant, life felt amazing! He was married to the love of his life, had a fulfilling and lucrative career, and was expecting not one but three babies. But his world was turn upside down when he found himself facing the reality of premature birth, one infant loss, and two premature babies fighting for their lives. His experience as a loss father left him feeling alone in a society which fails to adequately support mothers of loss and premature infants, let alone fathers.
Ted tells his story today in hopes of inspiring more fathers to come forward, to share, and to inspire hope and healing for those coping with the life-long challenges of overcoming prematurity and grieving the loss of a child.
If you enjoyed this episode of the Down To Birth Show, please subscribe and share with your pregnant and postpartum friends.
Between episodes, connect with us on Instagram @DownToBirthShow to see behind-the-scenes production clips and join the conversation by responding to our questions and polls related to pregnancy, childbirth and early motherhood. You can reach us at Contact@DownToBirthShow.com or call (802) 438-3696 (802-GET-DOWN). We are always happy to hear from our listeners and appreciate questions for our monthly Q&A episodes. To join our monthly newsletter, text "downtobirth" to 22828.
You can sign up for Cynthia's HypnoBirthing classes as well as online breastfeeding classes and weekly postpartum support groups run by Cynthia & Trisha at HypnoBirthing of Connecticut.
Please remember we don’t provide medical advice, and to speak with your licensed medical provider related to all your healthcare matters. Thanks so much for joining in the conversation, and see you next week!
Support the show (https://www.paypal.com/paypalme/cynthiaovergard)
I'm Cynthia Overgard, owner of HypnoBirthing of Connecticut, childbirth advocate and postpartum support specialist. And I'm Trisha Ludwig, certified nurse midwife and international board certified lactation consultant. And this is the Down To Birth Podcast. Childbirth is something we're made to do. But how do we have our safest and most satisfying experience in today's medical culture? Let's dispel the myths and get down to birth.
Hi, I'm Ted Yang. I am a father in New Canaan, Connecticut. I am married to my wife, Christine. And we had triplets born at 24 weeks 12 years ago. And 24 out of 40 is not a very high percentage. And so my children were super premature. And because of that, we went through hell and back fighting for their lives. And I wrote all about that in my book table for five, I met my wife plushies. Now I feel old. But a while ago, I had just graduated college and she had an internship in Boston. And she actually stayed at my fraternity house, we rented out rooms to girls, clever people that we were at MIT. And we kind of got to be friends first, and then data which went back to school. And I moved to New York City, I lived there for a while. And it took a while for us to get married. You know, we're pretty young and what have you. But we got married in 2003. And then the birth of our children happened in 2008. And so from the beginning, we, you know, knew that we wanted to have children, I actually personally, for a while didn't want to have children, I come from a pretty strict household. I'm the son of two Chinese immigrants who had to first flee for their lives to Taiwan. And then, you know, in order to get to the promised land, that is America had to get to Canada and get degrees because they weren't letting people in from Asia till late 60s. And then if only if you had, you know, advanced degrees and high earning potential as it were. So they studied and about Matt in Canada when their master's degrees and move to the US. And so they made it very clear to me when I was a kid that I had to make good on everything that they had sacrificed to be here. And thankfully, you know, I'm kind of a overachiever type kid. And that was fine. But the way that I was raised, I really didn't think I was cut out to be a father. But you know what happens when you fall in love, and you, you know, stay with a partner for a while and you know, biology, you know that and sooner or later we, before we got married, thanks, thankfully, agreed that we want to have children and then by the time kinda all rolled around. Thankfully, we were here in Connecticut, I am a planner, I'm an engineer by training again. So I wanted to have a lot of the ducks in a row. And thank God for that. Because really, we could not have anticipated. No one can anticipate the magnitude of problems that we had, because our children were so premature. Anyway, my wife around 23 first started to have problems. And we really wanted to stave off the pregnancy, of course, because we knew from from a while ago that this was high risk because of you know, three at once. But also that the the earlier they were the bigger problems they were well unfortunately, that couldn't happen. So at 24 weeks and five days before she gave birth at Yale New Haven Hospital. And really that's the beginning of the story because what what ended up happening was that we were in the NICU, ultimately for eight months before my daughter came home. And when she did come home, she came home with a breathing tube and on a ventilator. And then I ran a NICU out of my house for four years. Basically, we had 24 hour nursing and it required three major surgeries. reconstructions of her airway in order for her to breathe out of her mouth and her nose like you and I do. And beyond that, then she had to learn how to eat. Because if you can't breathe out of your mouth or your nose, you can't swallow. And how do you teach a child how to swallow? Turns out, there are some therapists that do that very specialized therapists. But it basically took six years before all of the medical things and risks were done. And that's very, it sticks very, that those six years stick in my mind, because the outcome for my other children was kind of mixed. So my son came home from the PICU, around his due date. So about three, four months in, and he came home fine, he was pretty much fine, you know, small, but okay. But he ended up being diagnosed with autism some years afterwards. So both my children have their challenges and ongoing. And then unfortunately, we lost our third child, my son, Raymond, he passed a week after his birth, he died of necrotizing enterocolitis, which is just another fancy word for sepsis, which is just a fancy word for infection. And so he no one knows exactly how there's 101 different possibilities of how necrotizing enterocolitis refers to a breakdown of the bowels. But it could be caused or could be affected or could be correlated or unclear. Anyway, he made it a week died on September 11 2008. And the six years is poignant, because I think it took it wasn't basically it was six years that we I should say my wife, maybe a little bit different more than me, but I really was able to grieve. Because the day after he passed, the day after we died, we were back in the Nikki fighting for the other two survivors, right? We literally the same room. And, you know, the same doctors or nurses, right? And, and that's what we had to do. And again, between the four years and the six years, and all of the other medical things that we went through with my daughter, where was the chance for us to stop? There wasn't one, how could there be? Right, you had to keep pushing, you had to keep fighting? So in all of that time, what stuck out to me was that well, one, I don't know how I survived certainly not the first 18 months, my wife and I talked about it. Now we don't know how we got through that. I think the most important thing was we had to lean on other people realize we were not alone. You know, like I say I go through in my book chapter five, there's, there's there's on and on about those stories and the detail. But the I don't know how we got through it, it's you really only by taking one step at a time. And you know, Family Resources and those things were around and that was good. But really, and this is really leading to why I wrote the book in the first place. For a lot of those years. There weren't any resources for dads now talking to this with my wife now actually wanted to side on this was when I decided to write this book, then that wasn't till maybe now Mike and the kids are eight or nine, I first encouraged my wife to do it. Because she's a liberal arts major, I'm, you know, again, I'm the engineer, and she didn't want to do it. And that's fine. You know, she's more of a private person than I am. You know, even though she's a better writer, and I then decided I'd work on it, did it for two years five and told her I did it. And so I got to the point where I had already brought on an editor and was almost finished with the manuscripts before I told her this June, for her birthday. And anyway, when she was so good, she's very supportive, and you know, thankful for that. And one of the things that she pointed out, though, was in the story, and in terms of what we were going through, that the resources weren't there for her either. And I think everyone would agree with that. And when I say resources, I mean for the gamut of things, but specifically, I'm referring to, you know, child loss, regardless of how that happens in the hospital setting, as well as, you know, the ongoing, you know, trauma, you know, the PTSD, if you will, that is inflicted on parents when they have very sick children, that they are mostly powerless to help. Right, that is not a very comfortable place for people to be. And, you know, look, this is a while ago, and Yale's resources have gotten significantly better. However, they were wholly inadequate, I think for both family members, parents, mothers and fathers, but relative to fathers, they were non existent. Right. So it wasn't even go talk to the grief counselor, or Hey, get together with other dads it was, you know, you're not even here. And I think one of the problems, at least from from my perspective, was, you know, I'm part of the problem too, right? Meaning I'm not a big crop stereotypically In this sense, you know, going out there and telling people Hey, listen, I got lost a child. I need help. You know, I tried to be strong, right. And I think one of the problems is that the you know, they they kind of played into that, right, so they were more than happy. For the dads who probably need someone to break down the walls, they weren't gonna break down the wall.
I'm guessing you heard a few comments around how to support your wife how to support your wife. Is that true?
Absolutely. And and, you know, it's it's, look, I'm the first person to say that the woman who, you know, parents, the child needs the care, right? There's the hormones, there's the physical aspect, but there's all of that there's her own health, right, which is at risk in the early days. And so I totally get it. And so I totally get that. But then to really kind of pretend that I don't exist and say, Hey, listen, how is your wife doing? And then says family and friends and you know, but even professionals? Right. And it's, it's, it's kind of, you know, depersonalizing for her and for me, right. And it's a crazy thing.
You said something else earlier that I always think about, you said, I don't know how we got through it. And sometimes I think about life stories. And I'm like, you know, who's to say we got through it, just because my heart kept beating is to say we got through it. I mean, what do you think about this, Ted? This phrase, we got through it, what does that What does that even mean? Right?
You're right. And actually, that's another reason I wrote the book, right? Because writing the book was cathartic to put it down on a page and really sort through what does it mean? And one of the things I discovered, especially when you get towards the end of the book, is that it isn't over, not by a longshot, right, because this wasn't an episode that happened. And then, you know, everything went back to normal, like, how could it right and you lose a child, the child doesn't come back and future children don't replace them. And when, you know, the problems that were resolved medically for my children, thank God, they moved on to other problems, right, the developmental disabilities, the autism, you know, the lingering health problems and disabilities that my daughter has, that isn't settled. Right. So what does it mean? I don't think it means anything. I think it's perhaps something you tell yourself, but it's something you need to tell yourself. Right? That's the other thing, right? So on the one hand, if there isn't an absolute ending, or an absolute, I'm over it, and we're past this. But on the other hand, you do need to have some of that otherwise, you couldn't live right. So that's part of it, too.
Well, was there anything that you can recall in those early days and weeks that somebody said to you that was helpful and was supportive?
Well, absolutely, absolutely. I mean, I think one of the things that was absolutely critical towards our health, and the health of my children, frankly, was that we had a friend who happened to be a neonatologist. So interestingly enough, you met this couple on a cruise, which is bizarre, while my wife was pregnant, because we knew, like if they would call that a baby moon, I guess now, we didn't call it that. We just call it a day, Jesus was last time, we will take vacation forever, turned out to be So true. Anyway. And we met this other couple who were, you know, on the, on the other side of it and with with adult children, who the this guy, Dr. Bob, and Bob Roth is his full name, you know, was a neonatologist out in San Francisco and actually had had led the neonatology, Nia, Oh, geez, I don't know neonatal transport or pediatric transport. But for the state of California, anyway, just so happened, which is amazing, because he was both a father and a physician, and, you know, an administrator, so he understood all the different aspects of it. And without, unfortunately, he passed away some years back. But I dedicated the book to him, as well as one of the nurses, one of the few nurses who unfortunately, also passed on too early. But anyway, if it wasn't for him, I don't know how, right because he was able to relate on all those different levels. To me, I, in terms of what was actually said, It's funny, because I don't remember a lot of the actual stuff, I can remember some amounts of detail of like, perhaps unimportant things. And, you know, I did, and I do think it is, you know, traumatic, it was traumatic. And so, you know, my memory is sparse for that reason. But I do know that a lot of it was just, you know, frankly, the kind of support that you would want to have from any other human being.
Yeah, it's interesting what you said that you don't remember the words because it isn't ever the words that people say to us that we remember, but it's, it's how they made us feel with the words that they said. So you forget the words, you remember the feeling?
Absolutely. And as I said earlier, one of the problems is powerlessness, right? And, you know, you're the observer. I mean, again, especially as the Father, but even as a mother once the children are out there, and they're, you know, they're in their incubators, and we're, we're trying to, you know, fight for them. You know, we're, first of all directly, can't do anything. We're doing it through the nurses, maybe later on, we start participating in their care and of course, then she came home we had to be directly doing her care, but most of it, it's it's powerlessness, right and, and for me, I you know, as again, as The son of immigrants, the you know, who've kind of walked the path. And you know, I've been very blessed with a lot of different things in my life, but also worked my ass off to do it. Not being able to do anything is very difficult. And I remember that's the one thing that Bob I know, you know, as you say feelings, I don't know what he said, but essentially making that okay, for someone like me, right, Nick, normalizing it for someone like me, was huge, and absolutely a gift.
Yeah, it's a common experience for partners through even a healthy, regular, ordinary, everyday birth to recognize their own powerlessness in the experience, but yours was something that turned into trauma, it affected you and your wife and all your extended family, and it lasted for years and years with chapters to it. So at what point did you come out of a crisis mode, and start to recognize that there was a lack of anyone to talk to a lack of support, lack of recognition of the emotions you were experiencing?
You know, it certainly wasn't in the first couple of years, as I said, because those were the most tenuous times. As, as I talked about, you know, in the book, there were several incidents where Sophia, you know, died on the floor or family, literally, there's one particular incident that, you know, when the middle of the night and, you know, the we saw, again, we had nurses 24 hours a day, and the reason you have to have nurses 24 hours a day is because your breathing tube is, you know, tiny, right, and it's but your tiny little baby with a tiny little breathing tube, and it takes about 90 seconds to suffocate. And so there's 100 different things that can go wrong blockages, you know, even in normal things, not even, you know, extraordinary sickness or illness just in normal, you know, moving around, and the trade gets dislodged, or what have you. And so she needed a nurse 24 hours a day, and when the nurse was unavailable, because the weather we have here, you know, does snow, or it certainly snowed a lot, then, and then my wife would, I would know, morning would have to cover 12 hours and be the nurse, like no story that doesn't matter during the day during the night or what have you. And you know, sometimes, you know, there will be days, we went through some pretty bad snowstorms, I recall. And, and it'll be returned me to switch back and forth, back and forth, back and forth, back and forth, just to be the nurse. Because someone had to anyway, the, during all of that, right, during all of that trauma and what have you. I don't I didn't have any time to go out and think about, you know, what does this all mean to me? Or any? And what resources do I need? Now? Of course not. I mean, we were we were living, you know, to really for her survival, and some of my son, but my mother was living with us at the time, because someone had to watch my son. And anyway, so it was some time after that, I think maybe one of the first times was, when we were down in Philadelphia, chop for her, this is our second reconstruction of her airway. The first one that we did there, we had to stay there for, you know, 10 days, right, because these were major, you know, 10 plus hours in the O r with, you know, billion surgeons, you know, million dollars plus, you know, surgeries that required a week of recovery. You know, they literally rebuild her airway, take tissue, graft it and do the whole nine yards. And because of that, you know, and my son was here with my mom, and, you know, a housekeeper, and we were down there. And, you know, my wife and I were like, Well, look, you know, we actually had a chance to actually even be a couple, but also even start to digest and talk about it. So that was some of the first times I think we were able to talk about it, and then say, like, well, now what kind of support are we getting, but interestingly enough, at the same time, while that's happening, we're still getting medical care. And at CHOP, a similar thing happened, where, you know, they asked my wife, whether she would want to stay in the room with my daughter, Sophia. You know, as she recovered, they didn't ask me, why would. Right. And, and, you know, I remember that distinctly, my wife doesn't remember it quite so. So distinctly. But for me, it was it was again, like it again, I was like, the one hand was not that surprising. He didn't ask me and then I'm like, Okay, I get it. Right. I understand why he didn't ask me But still, like your code of right. And so there was definitely a lot of awareness that, again, the resources are not geared there, for fathers and for me, even then, you know, looking out and saying, you know, are there other people who've gone down this journey that I can even, you know, just draw some string from or understand how they screwed up, so I won't screw up maybe. Right. And, and a no, and by here, I would say, you know, in any form, right. You know, again, there were some, but you know, even 12 years later, by the time this book came out, when it just came out last month for national prematurity day, on the 17th of November. It, there's nothing there. There was nothing there. There's a few more stories now, from a father's perspective, but there's still not enough where I could have been like, you know what, someone's already did that and did it better than me? So I you know, but if Wasn't there? So I, you know, I it's not that I'm a voice in the choir, I think unfortunately, I'm kind of shedding some light on things that haven't been, you know, had been in the dark for a while.
Did you ever get support? Other than the friend in California? Did it ever come through?
Of course, I mean, did you ever have a men's group? Did you ever have a support groups have substantial support ongoing support? Or I don't mean, did people care about you, theoretically, and ask you how you're doing now? And then I mean, did you ever really have support that was holding you up a place to go when you needed to go? That was just available at the ready? Did that ever develop?
my god. So you're really at the forefront of what you want. For other men? You're, you're creating what you to this day really never had?
How are you doing that?
Yeah, well, so I think there's a couple different things, right. One, I think is awareness that you're not alone, right, that's the first thing that has to start there, that you're not alone. And it's okay to be, you know, more vulnerable and open up. Right. That's, that's the perhaps the first step right. And I think that's, you know, getting the book out there. And awareness of the book is the biggest way to do that. There are some men's groups. So interestingly enough, my wife is, you know, she's been the vice chair, and she works as a volunteer for the tidy miracles, which is a nonprofit that helps the families of parents with a child and the Nikki, and there is actually a men's group of sorts within that. And so I have, then, you know, in the last couple of years, there's more than a couple years, maybe three or four years, that she's been working with them, you know, talk to some of these other fathers. And now at least at least understand that there's some other stories out there, but it's not proactive. So even within tiny miracles, interestingly, there's still not a lot of helping fathers. And it's something that they're themselves working with, and working on. I was just talking with the people, the March of Dimes, and they're also interested in doing this, that, you know, supporting from a story perspective, families, and then also trying to put it together, you know, let's call it, you know, dads groups or whatever you want. But just just an idea of saying, like, it's a safer place, that you can talk about this to other people who either are going through it or event, right. So I it's starting to happen, I see that, you know, as part of the vision, right, of, like, creating more opportunities, and no more I would want that awareness to be spread through, you know, all essentially hospitals, because that's where you people would learn about it. Right. My brother in law had also a similar experience, because this is my wife's sister had some some issues, you know, regarding, you know, miscarriages and what have you. And he, you know, he experienced exactly what you said earlier, which is everyone was asking him how she was, and I went out of my way to be like, Hey, dude, how are you? A right. And I said, Listen, I know, no one asks, I know, I don't have to I know this, you don't even have to tell me, no one has asked you, because I know no one has asked you, because they don't do that. Right. So I'm asking you, how are you? Right, and, you know, I think that, you know, this is my own way of doing this and trying to help other fathers, you know, the people I know, in my circle, right? And if that could be broader, and it could be more, you know, shared across the the different dads who are in the situations, unfortunately, that would be, you know, a fantastic thing.
Ted, what's it like, when you ask these fathers? What kind of responses are you getting from them? Like, how willing are they to share and open up about their feelings?
You know, what, it's mixed, it's mixed. So one of the things that I the way I lead the book is with a discussion about lunch, right? So I have, I'm an entrepreneur, I, I like to meet a lot of people, I'm pretty extroverted. So I have lunches a lot, right? Well, not now. COVID, what have you, but prior, I'd have a lot of lunches and at lunch. You know, a lot of times people will just say like, Hey, you know, tell me about your family? Or do you have kids or something like that? And for me, it's very simple. Because once they say that, they go, Oh, well, Do you have kids? How old are they? And if I say 10 1112, whatever age they were, then at this the same age, right? So then someone immediately comes back and says, Oh, you twins, but that's great. Fantastic. And now Now I have to say, Well, hold on a second. Because if I say you're right or cool, then I'm, you know, denying the existence of my soul. But here's the thing though, right, Cynthia? Like an interesting, I do it anyway. Right? Well, it's the kind of person that I am 99% of the time. Now, sometimes I have a very, very specific goal, you know, out of that lunch, and I want to keep it much more professional, but more often than not, I'm like, you know what you asked? So I'm going to tell you, you know, and that's fine. And so it's, it's been something for me, that I over time, I've kind of constantly been kind of getting out there and saying something, have to go out there and say something And sometimes when I say something, so I, I hear a story back. So someone I'm having lunch with says, You know what, I've lost a child to even, even on the launch of this book, you know, sending out a post on LinkedIn, and someone I didn't know who had lost a child messaged me to say I lost a child. And so, you know, I don't see a lot of men sharing out there. I don't think it's very easy for any of us. I don't By the way, I don't think I've been special. I think I just, you know, just took time to come to this awareness. I don't think you know, again, it's not it's not a lead off question for for mothers or fathers. Right. But certainly, I think you know, for men it's it's caught up with all the be strong and silent. And you know, you're there for her kind of stuff.
I think some of the most eye opening things that we learned when we did our stillbirth roundtable episode, last March were, statistics show that the the median peak of when the grieving hits loss parents the hardest, is it at around four months. And that's the first thing that was incredible because the support, whether it's good support, or not so helpful support comes around the mother and or the parents. In the beginning by four months. Usually it's radio silence. And then that is linked to another problem. And I myself grew from participating in that episode and pulling together that episode with Trisha. When the mom is made really clear by saying please never stop talking about my child, please always ask about my child who's gone. Please remember my child's name on Mother's Day, Father's Day, please acknowledge that this child existed. And I remember saying, I think the fear I can feel it in me is like, I'm afraid to upset that parent. And they said you can't remind us that we lost a child. So please ask because all we want is that the world remember this child existed?
Yeah, I completely agree with it. And exactly what you said, you don't need to remind me I lost a child I you know, I don't think I forget, cuz I'm, I'm guessing when people ask you and use and they say, oh, twins, and you're like, Well, actually, we had three, we lost one. I'm guessing a lot of them are like, a little bit sorry, I asked sort of thing. And for you. It's like no, because now I get to be seen now I'm actually having a more authentic lunch. Now you really know who you're having lunch with?
Exactly. Right. Exactly. Right. And and and, you know, interestingly, I think I took this out of the more recent drafts, but I think earlier on some of the drafts of the book, I go, Well, you know what, if you don't want to have lunch with me, that's fine, right? Like, this is who I am, right? Like End of story. Now, of course, again, I come from a different place, you know, in my life where I don't have to worry too much about this. I'm not in a position where I can be more, you know, equals with people that I'm eating lunch with, I'm not necessarily to get a job or give you I'm not sure exactly, that would be the right scenario. But yes, I think that's right. And I am four months. Interesting. I didn't know that. You know, in my own story, that was when Daniel came home, right? So he came home. And then now we had to deal with a whole new thing, we had to deal with splitting our attention between a son that was home and going to the NIC queue, again, where my daughter was still and then it took another four months for her to come home. So it's a four month thing is very interesting to me, didn't well for you. I imagine it's different. And I keep thinking of Joe Biden, actually in your case, do you ever think about the similarity? Here's why. Because when he talked about his wife having the car accident with his three children, he instantly lost his wife and baby girl. He keeps talking about the days and weeks after where he just prayed that he wouldn't lose his sons. And I keep thinking like, what, where's the grieving for the wife and daughter? When could that happen? And you realize he was just holding his breath saying Please, dear God, don't take another one right now. I'll deal with that later. I have to table part of that right now. Because I need these boys to stay alive. And I feel like for you that four months might not exactly apply. Because you were still so much in that prayer mode, that crisis mode of making sure your other children survived. So it had to unfold in a much more complex way for you, I imagine.
Yeah, no, that sounds right. And I think I think in that case, there is a similarity there because it was about I have to keep fighting for for my other children. I you know, I certainly couldn't lose another one. So we, we had to keep doing that. And then and again, even when we thought, you know, the and again, it's never over but the goalposts kind of kept getting moved now, you know, Daniel came home and it was roughly fine. until many years later, we discovered he had autism, which is not life threatening, right. But for Sophia, it was really like the goalposts kept getting moved. Right. And that's, you know, a bit of the kind of Groundhog Day that I allude to in the book, which is that there is a constant of Oh, well this will be okay and it seems okay and then you're just waiting for the shoe to drop because something is going to go wrong. And there was you know, that that that kind of aspect of, of, you know, never really thinking your way through it. Even when logically you do think you should be through it is absolutely part of our story. I mean, it's it's, you know, the going back to the running of a NICU in my house, you know that we had nurses, we had machines, there's always something beeping, right. And it was just constant, you know, the noise. And in fact, the noise is reassuring. Right? So like, you know, we're, we're both able to sleep, and with the understanding that the machines would beep and then when they're the absence of beeping, we would wake up, right? Because that would mean something's wrong. Right? Just just very fascinating. Just what you can, you know, subconsciously. Yeah, totally. But the interesting part was, and this is true, and it's not, not in the book was after the, the devices were gone after the nurses were gone, because she was able to breathe out of her mouth and her nose. And it was actually hard to sleep. because there wasn't this immediate, you know, there's this, like, my wife talks about this. More was this, this kind of, like, Phantom, getting up like she just like, holed up in the middle of the night thinking there was a crisis and there was no crisis. Ted, I just if you don't mind, I just want to ask a couple questions that I know everyone is thinking right now. A How are your children right now? And then be can you make a comment about the money? The million dollar surgeries? The 24 hour nurses? Do you have to be filthy rich to get through this? Do you have to be lucky enough to have good insurance to get through this? I can't imagine your compassion toward people who don't have resources. I can't even imagine how many times that thought must have crossed your own mind. But can you talk about that? And then afterwards, tell us how your children are today?
Sure. So definitely one of the parts of Table For Five is about how could you possibly survive this right. So luckily, I had, you know, we've waited long enough for me to accumulate a lot of resources. And now I'm, again thankful for what I've been able to accomplish. And so we had a lot of resources. But even regardless of that, if we didn't have a ridiculous medical insurance, I still would have been bankrupted because 24 hour nursing care a day for years, not counting, you know, all the medical procedures, not counting, you know, three major surgeries, etc, etc, etc. I think her bill was over $10 million. So now, of course, the way our system works, you don't pay this price. So what? Right, so I don't know that that would have bankrupted me. So the it is in the book that, you know, I at the time, my children were born, we know, worked at the largest hedge fund in the world, which happens to of course, be located in Westport, Connecticut. And, you know, I worked pretty directly with Ray, the founder of this is Bridgewater associates. And, yeah, and so, it this is definitely in the book, you know, there was a circumstance there, where, you know, the insurance could have been changed for the negative is after I left. And I emailed him, and I said, Listen, this is the disasters, but not just to me, but it does, it violates your principle. And if you know anything about him, he's Mangle this by principles, and wrote a book about it, and the governance is Lifeline, that would violate your principle of taking care of people when they need the help the most. And he took care of it, he sent an email to a senior staff, which is what he tends to do, like 30 people saying, is Ted, right? If so, fix it. And they did. And it was really only being utilized by maybe me, probably, by now, maybe a couple other people, but at the time, it was just me that was, you know, affected by the change that they would have made. Anyway, um, but if that's your plan, your ability to call a billionaire and ask for his help. That's not much of a plan. And so you're 100%? Right. I mean, we can't even when we're living this going, Well, how lucky are we to be able to have, you know, resources that we can, you know, have my mother live with us that we can have, you know, health around the house that we can, you know, do these shifts, because there are people who work at the same time and are expected to pick up shifts, you know, when nurses aren't there for their children on tricks, or ventilators and what have you, and I have no idea how that works. In fact, unfortunately, I do have some idea that it doesn't work well. It results in children having to go back to the hospital, it results in unfortunately, children, you know, being harmed or dying, because their parents can't provide that care. Right. It's, it's, it's a horrible thing, that in this country, we don't have health care, that can meet the needs of people as vulnerable as these, you know, premature or, or just newborns in general. It's, it's a tragedy, it's a travesty. And later on in my life, I was interviewing for a job in the UK doesn't matter. But, you know, I was talking to them about how listen like this, thank you very much. But I, you know, I, how does this whole insurance thing work? And they're like, what, what do you mean, right, because they have the NHS over there to help nationalized health care, and socialized if you will. And then you have private insurance on top, and then they were like, well, this just can't happen here. Right. And I'm like, if that wouldn't happen here, sir. Like I don't really understand. I'm trying to ask all these patients About goes now by that point were super savvy about health insurance, right? About how that would work over there and that it's you're speaking Greek they don't understand. They don't understand how American health care you can see we have insurance that doesn't cover like, for example, this case medically urgent nursing, they don't understand. So you're absolutely right. It's something that, you know, for me is certainly that something I care a lot about is making sure that we have some amount of equity on this, because it's horrible. In fact, it's the opposite. I mean, and you already know this, that the people, you know, the the minorities, the black and brown parents, you know, just, you know, socioeconomic people who are poor have worse outcomes in terms of the health of their children, and then they have fewer resources, but then what kind of country is this, that that's, that's just terrible. And so, okay, but now, you know, how are my children doing now? Well, you know, they're 12, and they have developmental delays. So premies, that happens often happens at premium, especially severe ones. So for them, I think they act like they're about nine or 10, in terms of maturity in terms of their ability to carry conversation or sophistication. They're both amazingly sweet and loving my, my daughter is very, very feisty, she gets on our nerves a lot. And we have daughters. Ah, there you go. And she, she wants what she wants, and she just insists on it. But frankly, that's what kept.
She's a fighter fighter, and it's gonna make her a great woman's. I mean, I say that all the time, she'll either be president, you know, or she's gonna piss off a lot of people for both?
Well, she won't often look, there are a lot of women who are raised just to comply and to be sweet and to be agreeable. And, you know, may we have our voices at every age, and it makes it challenging and those little moments, but you can't help but respect that children who have their voices, they feel like individuals they recognize themselves as, as people who are our emotional equals, if not, are equal in any other way. Our emotional equal - 100% percent. And yeah, so So, you know, she wouldn't be here if she wasn't a fighter, right? So, and, but you know, she still has her challenges, right? I mean, so her voice through all of this is not normal, she has some disability in her left leg, you know, so she can't run, and you know, things like that. And then my son, so my son has autism, as I said earlier, and that's an ongoing challenge. And, you know, the later parts of the book, you know, in table four, five, I'm talking about the change in dreams, right. And that's, you know, something else that happens to parents that have to go through problems with their children, is that they have to reset their expectations about what it really means. And I think somewhat in a healthy way, right? Because, you know, I am privileged I live in a place of fantastical wealth. And, you know, I it would be just appalled it is it is currently appalling when you hear stories of some of these kids, and the crazy thing to do with the children of some of my good friends, and the things that let them get away with, and I'm like, Are you out of your mind? Like I, my, I am thankful that my children are alive. And I'm thankful that you know, what I worry about? Are? Are they going to be happy and independent? Right? That's it right? Are you going to be able to have a happy, fulfilled life with friends and loved ones or, you know, spouse or whatever? Children of your own? If that's what you want? And and are you are you going to hold down a job that's going to fulfill you? Are you going to be able to, you know, live live on your own, that that's what I worry about? Right? And it's not a given? I think it's likely, you know, I'm optimistic. I think it's likely, but I don't know that. And so that's a huge part of this huge one.
Do you recognize that as immense growth in you having your, your Chinese background with the high values with how your parents had to make their way into the country with the fact that you went to MIT? You worked at Bridgewater? I mean, do you recognize that that's growth?
100%. I mean, it's, you know, I think I put a whole chapter in there about it, because it's the things that I do now, I'm an entrepreneur, now, I've started a whole bunch of companies, I've done a ton of nonprofit work, you know, all sorts of things that we would never have done. Never, never, right. I mean, it's, it's, it's, there's so much of this is about growth for me, but also understanding like, really, you know, what I think is important. I, I, you know, I don't know. I don't know, you know, if by this time, you know, I would have continued to be working, you know, in finance or whatever, or maybe I would have gotten sick of it or have gotten fed up or whatever, by then. I don't know that but I do know that certainly relative to my children in my family and how I interact it's it's different I I do believe it happened for a reason, you know, bad things happen. And I try not to dwell too much about why they happen and instead of deal with like, what can we make out of this right? Well, what you know, not just look on the bright side, but literally like it did it happen for a reason Can you put meaning against it? And I that is I think the most important thing of all of that that has happened is that I think, you know, it's not always easy, right? I am certainly not a saint, right? So not every day, not every minute, but certainly I think enough. When I see my children I can be very, very thankful that they're alive.
Beautifully said I'm curious what the response has been like to this book, particularly from fathers have fathers started to reach out what have you seen? Who is it reached?
Yeah, well, so I'm thankful that the the reception has been pretty, pretty good so far. I you know, I launched it a couple of weeks ago on world prematurity day, had a bunch of support from you know, people I've I've run into in various lives, who've helped me get the word out. And that's great. And, you know, I have heard and this is really the most the most rewarding thing is is hearing is there really two particular stories but one from a woman who said that she and her husband had lost a child, and that she'd bought the book for her husband. And it actually provided some insight for her for the first time of what he might have been going through. And that's amazing. And then another one from a dad and it's you know, again amazing in and it's it's you know, for people to have heard about it and then been able to take some strength out of it is the whole reason I did it and getting getting those getting those those bits you know, as a good friend of mine said is it's like spiritual fuel. It powers me it makes makes me want to go out and do this more. Get the word out more and, and what else can I do because people are being benefited. And that's just it's such a good feeling.
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