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#097 - Dr. Nicholas Embleton MD


nicholas embleton incubator podcast

Hello Friends 👋


This week we have the pleasure of welcoming on the show the amazing Dr. Nicholas Embleton. Practicing in Newcastle in the UK, Dr. Embleton is the co-founder of the Butterfly Project, working with NICU families after the loss of a twin. Nic is a remarkable story teller and his journey is fascinating. We hope you enjoy this episode.

Have a good sunday!


 


Bio: Professor Nick Embleton is Consultant Neonatal Pediatrician and Professor of Neonatal Medicine, at Newcastle University, in the UK. He graduated with honours in Medicine at Newcastle University (MBBS 1990). His doctoral thesis (MD 2002) was on protein requirements in preterm infants and he continues his academic nutrition interests as a member of ESPGHAN Committee of Nutrition, as well as chairing the UK based multi-disciplinary Neonatal Nutrition Network (N3). Working with colleagues in Newcastle upon Tyne, he helps lead a broad portfolio of translational research. Studies include large scale NIHR collaborative trials as well as mechanistic studies focused on gut function, growth, and nutrition and necrotising enterocolitis. He also coordinates the Newcastle Preterm Birth Growth study tracking the growth, cognitive and metabolic outcomes of children who were born preterm into late adolescence. Current studies include exploring the impact of an exclusive human milk diet in very preterm infants and feeding in late and moderately preterm infants, as well as working with colleagues in Liverpool, Nigeria and Kenya helping to establish a Neonatal Nutrition Network in sub-Saharan Africa. He is clinical lead for quality improvement studies focused on loss of a co-twin, which have created a unique film-based educational resource with parents: the Butterfly project www.neonatalbutterflyproject.org. He works with the European Foundation for Care of the Newborn Infants https://www.efcni.org/ to help disseminate these, and develop other guidelines worldwide.


 

The transcript of today's episode can be found below 👇


Ben 0:54

Welcome Hello, everybody. Welcome back to another episode of the incubator. It is Sunday, we have an amazing interview for you today it is with none other than Professor Nick Embleton. This is an interview that definitely intended to record some time ago, but really, life got in the way of everybody and we're very happy that we managed to record and release this interview this year. This is an interview that many of you had requested. So we are extremely happy to be able to bring you this one hour conversation with Nick Hamilton on on a variety of topics. So for those of you who are not familiar with who Professor Nick and Bolton is he's a consultant, neonatal pediatrician and professor of neonatal medicine at Newcastle University in the UK. He graduated with honors in medicine at Newcastle University in 1990. His doctoral thesis in 2002 was on protein requirements in preterm infants. And he continues his academic nutrition interest as a member of the Afghan committee of nutrition, as well as chairing the UK based multidisciplinary neonatal nutrition network and three. Working with colleagues in Newcastle upon Tyne, he helps lead a broad portfolio of translational research. studies include large scale NIHR collaborative trials, as well as mechanistic studies focused on gut function, growth and nutrition and necrotizing enterocolitis. He also coordinates the Newcastle preterm birth growth study tracking the growth cognitive and metabolic outcome of children who were born preterm into late adolescence. Currently, studies include exploring the impact of an exclusive human milk diet and very preterm infant and feeding in late and moderately preterm infants, as well as working with colleagues in Liverpool, Nigeria and Kenya, helping to establish a neonatal nutrition network in Sub Saharan Africa. He is a clinical lead for quality improvement studies focused on loss of a co twin which have created a unique film based educational resource with parents the Butterfly Project, you can find out more about the Butterfly Project at WWW dot neonatal butterfly project.org. He works with the European Foundation for care of the newborn infants to help disseminate these and develop other guidelines worldwide. Without further ado, please join us in welcoming to the show Professor Nick Appleton. Dr. Nick Embleton, thank you so much for being on the podcast with us today. How are you?


Unknown Speaker 3:37

Good. Thanks. Thank you for inviting me.


Ben 3:41

We're very excited to have you on we've been big fans of your works more specifically about the Butterfly Project, which we'll talk about very soon. But we tend to like to start our interviews with neonatologist and trying to find out a little bit as to what led them to pursue a career in this field. It's rarely something that you say as a kid, I'm going to become a neonatologist. So we're always curious as to what what did the path look like for you, Nick?


Speaker 3 4:08

Well, I think I want it to be a pediatrician when I was at medical school. And so I went into pediatric training, I loved it. To me pediatric seemed like the best opportunity to kind of play around on the unit like all the adult positions seemed a bit stiff and pediatrics looked like a specialty where you could kind of play around a bit and it was a bit less formal. And I've now got four kids my own I think I've always enjoyed kind of playing with kids. So pediatrics for me was a natural career choice. I had no intention of being a neonatologist. And when I went to the neonatal unit, I thought, Oh, well, you are a bit different pediatricians. But, but then I secretly quite enjoyed it. And I was always embarrassed to tell my best mate that I loved neonates so much because we'd agreed that it wasn't the right specialty for us. spit. Yeah, I got there and I loved it, I found that I could intubate babies. And then once you learn to intubate and stick the IV and then it becomes a little bit less scary, doesn't it? And then you can enjoy it. So,


Ben 5:12

yeah, that's right. And and you've, you've spent your career in the UK more specifically, right in Newcastle. We often have physicians on the podcast who've taken their craft all around the globe through training and stuff. I think both both paths are equally fascinating. What, what made you so comfortable in Newcastle that you've never really felt I needed to travel?


Speaker 3 5:42

It's, I mean, Newcastle is a great place to live and work. I mean, for those of you who don't know, it's, it's up in the northeast of England, it's not the richest part of the UK. But you know, we've got amazing beaches and amazing culture and you know, a fantastic soccer team who never win anything, the magpies we never win anything, but that's fine. We're happy not winning. Now, it's, it's a great place to live and bring up the kids I did do a year in Vancouver as a fellow 20 years ago, and that was, that was amazing. And actually, I came back, I wanted to go back to Vancouver, like I thought, Oh, my God, this is the place to live next to the beach, and the mountains and everything. But they wouldn't give me a job. And I can tell everybody this now, but actually, one of the reasons I got into research was that I realized that people in Vancouver would never give me a job just as a regular Neo. Whereas I thought, well, if I get if I do some academic stuff, and pretend that I'm an academic, that job that seriously was the motivation for coming back and getting all my papers written up. And then, and then when I did get offered a job, and I said to the kids, oh, come on, mate, we can go back to Kevin earlier went on tab. We don't want to go any more. Like, I'll make sure over here in the UK, and I went, oh my god, like I spent five years pretending to be an academic. And now you're not going to tell me that you don't want to go. So that was that was devastating. But I got over it now.


Daphna 7:06

But that's it's it's actually, I think, a really important part of your story, because somehow you have been involved with such an array of neonatal interests pathologies. You know. So tell us a little bit about that. How how it seems like you say yes. And so there are lots of us who say, yes, maybe maybe too often. So how what's How do you balance it?


Speaker 3 7:36

I don't know if I'm honest. I think I got lucky. I mean, I've worked for a really inspiring Neo like an attending what we call a consultant EP and pay when he sadly died about 12 years ago now, but he was just this amazing character to work a Holic, but he was just in incredibly inspiring guy. And he was the one who really made me want to get into research. But I never went into medicine to become an academic. Like I went into medicine to look after babies and do clinical things. I think that's what draws us to neonatology. I mean, you don't do neonatology for the academic career you do for the buzz of working in the unit. But slowly, bit by bit, I kind of got, you know, sort of seduced into doing a bit more academic work. But it was only ever because I kind of enjoyed it. I mean, it was never really doing it because I wanted to be a quote some academic and I wanted to be a clinician, I think I still am a clinician. But yeah, like you definitely the problem is that opportunities come along. And do you think Ah, just looks really good fun. And you started before you know it you're involved in? Yeah, more projects. And it's a bit like I kind of say to people, it's a bit like, you know, that guy in the circus who has all these plates on these big stick. And he's kind of putting these these plates around and you think I can just about getting other plates spinning down in the background, and then one starts getting a bit wobbly and smashes to the floor. You think all right, well, perhaps it wasn't such a pretty plate. But yeah, I sometimes get a little bit Wheezy. The number of projects I've gotten involved in but but as I say, I've only ever done it because I've enjoyed it. And yeah, I don't want to miss out maybe.


Ben 9:23

I mean, this is you're describing our daily routine on so many things, but it's complicated sometimes to explain to people how much fun we're having working like What do you mean like you enjoy doing this even after your clinical hours? Like yes, I do. And and that just keeps this keeps you trying to put one more plate on there. Okay, one of the reasons why I'm really excited to have you on is because we're going to talk about twins and I am fascinated by twin pregnancies, twins throughout history. And so I wanted to start off by mentioning Obviously the Butterfly Project, which is a project that people can find out more about at WWW dot near NATO Butterfly Project that org. But for people who are not familiar with the Butterfly Project, can you tell us a little bit about what is what is the Butterfly Project.


Speaker 3 10:18

So so the butterfly project focuses on the unique situation where the mother has a multiple pregnancy, most often a twin pregnancy, but it could be a triplet pregnancy. And one of those babies or more doesn't survive, and one or more babies do survive. And I think everybody listening who works on a NICU will realize that they see the situation on NICU like every, every week, you're probably going to have a baby who was for a multiple pregnancy where one of the other babies didn't survive. It's a very common situation. So we see it a lot with preemie babies. But it also occurs in in women who may have an early miscarriage. It may happen in a twin pregnancy where one baby has like a congenital anomaly like an in carefully or some kind of complex cardiac condition. It may just happen. You know, without any warning, like, you know, maybe there's some complication, or delivery or whatever. So it spans miscarriage, stillbirth and neonatal death. And it came about because I'd started doing a project with a sociologist. And she'd been working with women in fetal medicine clinics, who had had a fetus side, because of the detection of a fetal anomaly. And the women now offered the option of fetus side before they go on to deliver the fetus. And, and that's a hugely emotional and maybe even contentious topic, I guess, particularly in the US. And so our first project said about to speak to parents and staff. What does it feel like to be involved in an active decision to stop further intensive care? Right, so when we, you know, have a baby who's been through three rounds of laparotomy, for neck and they've got PVL. And we're all thinking this just doesn't feel like the right thing to do. We speak to parents, how does it feel like to be a parent asked to be involved in that decision making. And and of course, we all learn how to show parents that we're taking clinical responsibility for this decision. But at the same time, we recognize that this has to be a joint decision in how do you as a parent feel, too involved in a discussion that ultimately ends up in your baby, then not surviving? And we did that. And that really introduced me to all these kind of sociological concepts of identity and gifting and these things that as a medic, you never, you never know about, right? Because they didn't come into medicine, permanent identity became a very strong theme for us. It was when we were doing these interviews that we realized that some of the parents who were speaking to had twins and one twin had died. And I thought, we see this all the time. And we just don't know how to deal with it on the DNA till unit. And I think in the past, the temptation is just to try and pretend that the twin who died never existed. We didn't talk about that, because we thought, Oh, my God, like I might make the parents cry. If I mentioned it, let's let's just try and pretend. Or sometimes you don't know, right? You've been away on the eve and you come back into the NICU, and it's your attending week, and the 20 babies in front of you? How are you to know what the history of that that baby is and whether they had a brother or sister. So I realized that this was an issue that confronted us clinically, but we've never really done anything about it. And that's why we then set out to do the research, where we spoke to families who had had a multiple pregnancy where one baby had died and one baby survived or more. And then that led on to the Butterfly Project because like you I'm a clinician, I didn't want to do a piece of academic research that sits in some social science journal and doesn't do anything. I mean, I just wanted to get to make it a practical thing. So having done the research and doing what you call, like a thematic analysis, you know, one of the key themes here for parents, we then developed guidelines, you know, for other people just to say, Look, these are the things that parents talk about, these are the things that matter to them. And then here are some things that you can think about or things that you could do that might make it better for them. So that's really where it where it started off. And then it's grown since then, because after the research, we did workshops with parents, and as we were sitting in the workshop Oops, I remember it now a mum who has sat in one of the sessions just suddenly said, a blue butterfly, a little blue butterfly, she said, just put it on the side of the incubator, that everybody will know His twin. And she said, I literally kind of slept beforehand, I went, oh my god, like, that's so obvious. So this wasn't my idea. I mean, this was a mom's idea. And honestly, I can't remember which one it was. But we made it into a purple butterflies that wasn't kind of pink or blue. And we literally left the workshop and I went to the NICU. And I said to nurses, we got to do this. And we drew out some butterflies and laminated them on the unit and cut them out and turned around and started sticking them up. So it kind of just grew and grew like a lot of research, you start off doing it you've you've no idea really where you're gonna go. But But it had huge practical relevance. And it means so much to people. That it that it took off. And you know that we've done the films and the other projects with it.


Ben 16:05

Yeah, I think I think this is where the Butterfly Project is such a, such an innovative idea, because it really starts off with the need at the ground level and the parents, right. It's not something that you submitted to a committee that said, Oh, this is actually compelling for stakeholders, and we should support this. This is something that mattered to families at the bedside. And I think this is most likely why there was just gained so much momentum. I'm also wanting to highlight something that you've mentioned, which is that you were very modern, in your approach, like you said, you didn't do a study and write a paper, you have a this website, which is a platform where there are videos, testimonials, resources. Was that something that from the beginning, you realize that this needed to be organized in this fashion? Or is this something that grew organically out of need, and creativity and so on?


Speaker 3 17:04

We, after you've done the research, it was it was pretty obvious that I needed to write it up in a form that made sense to clinicians, right. So none of my nurses and most of my residents, fellows aren't going to go off and start reading social science papers. So I wanted something practical to come out of it. And therefore, it was quite easy to sort of see that making some guidelines and teaching pamphlets was a was a kind of logical next step. But all the time, I was I was struck by what it felt like to actually listen to parents speaking to me, like seeing their faces, and actually hearing them speak. And I was aware that, you know, kind of going around and be talking about it and reading out their quotes, just never did it really, you know, it didn't, it didn't feel as powerful. And so I thought, Look, we need to make a little short film. And we found a film producer who was amazing. And, you know, I honestly thought we were going to make a 15 minute short film. And so I spoke to the film producer explain to him what the concept was, he got to know the families and then he went out and filmed them at home. And it became obvious to me then we we shouldn't just make a kind of short film, we should try and use this to demonstrate the themes, like actually hear the parents speaking about these themes. And so he did this amazing job of, I guess cutting the different sections of film, and then putting them aligning in with with the themes that came out of our research that then you can go to this website. And you can listen to different parents talking about why they felt special. To have a twin pregnancy this, this, as I say, this sort of identity, that as a parent of a twin pregnancy, you have this, you feel this kind of sense that you're special, because everyone says to you, oh my God, you've got twins, like you have this real important sense. And if you're a twin, you have a real sense of identity that you are a twin. And then when your twin dies, or if your mother and one of your twins dies, that kind of identity is is ripped from you. Like of course, you know, you still have twins, but everybody else doesn't look at you now that you've had twins and so you lose that identity that was so important and special. So So we kind of weave these themes into, you know, into the different kind of film clips and then set up this website, just that other people could, you know, healthcare professionals could just hear what it feels like because I think, particularly if you're, you know, you're a student or your resident or whatever, you don't get to see parents like, like we do you don't sit with them. As you're having these discussions about, you know, should we discontinue active intensive care or You know, speaking to parents about the really difficult head scans, and you don't see them, when they go home and they come back for a bereavement clinic with us, you don't get to see or hear that as a student or a trainee. And so, you know, the film clips with the kind of next best thing, look at these parents faces and see what it means that the way that we behave, and the way we speak to them, has such a huge impact on their lives. And so that's really what he wanted to do with the film project.


Daphna 20:31

Yeah, I want to so for people who haven't been to the website, so you have a page totally dedicated to the stories of parents. And you can hear firsthand, like you said, these different themes that are similar, but different for every, you know, every family. And in addition, you have a set of guidelines for neonatal professionals to help with with families who who have a butterfly or a twin that has died. And I mean, they're, they're simple. They're brilliant, because they're so simple. And if it's okay with you, I'd like to read off. Yeah, I mean, you have these eight simple guidelines, and I have pages of information. But I think that the keys are this recognize twin status, right. So much this is something that happens in bereavement all the time. We try not to bring it up. But for these families, they they they know they have a missing piece of them. Right. So recognizing twin status, acknowledging the bereavement i You alluded to it, but it seems like we just tried to like push through it because they have this other baby to care for. And so often their grief gets skipped right or delayed, dealing with another sick infant, provide emotional support. I mean, that seems so obvious. But we're so often engaged in the the, the logistics and the numbers and the pathway that just these simple interventions of asking parents how they're doing, provide appropriate information. At first, I didn't understand this guideline, but I think you guys did a great job with this one. And what it is, is, Nicu parents are really stressed out. But these parents have lived through the worst case scenario, right, losing a baby, and so they're even more aware of the risks of being unique in the neonatal care, space, provide continuity, offer memory making handle cot occupancy, sensitively. So I think this is really important. Where is the remaining twin in the unit? Are they near other twins? Are they near where their twin was? I've had both parents, families, families who wanted to be where their twin was, and families who didn't want to be where their twin was. And we don't know what's important to each family, and then preparing parents for discharged from the hospital to leave with one baby instead of two or three babies. They're so simple. But but they're, they're brilliant. And so how did you narrow it down to even just


Speaker 3 23:33

eat? Well, you're right. I mean, it's, you could kind of go on forever. But But these eight themes were ones that that all the parents talked about, you know, so these were the kind of most prominent themes that we saw. And, you know, we felt we had to, you know, if we started doing 20, then people aren't going to read the guidelines. So I think I had to, like stop at something that, you know, people could kind of focus on and do something about. And I guess within all of this, the kind of thing that I wanted people to kind of pick up on is that none of this is rocket science, right? None of this is gonna get me a paper in Nature. And this is all really, really kind of simple stuff. But it's almost so obvious that you don't see it in the NICU, like you're so your nose is on top of the baby, and you're looking at the blood gases and everything and you don't actually stand back and see what this means to families. And a lot of this is really doesn't require high level training. It doesn't require us to go off on long training courses or buying new equipment. This is actually pretty straightforward stuff. And, you know, we came up with this phrase, it's the little things that count, right? The parents didn't expect us to be miracle workers and bring the baby back to life or, you know, to be responsible for somebody else's decisions or to be a psychologist or a religious leader. They don't expect that from us as doctors and nurses, they know we're busy. But they they really are pretty hate it when we act with empathy. And we show them that we do understand that this makes a lot of difference to them. And it means that it means a lot, that they are a mum of twin babies, one of whom died, it means a lot, that we remember the name of the baby who died. And that we acknowledge that the surviving baby is a twin and not a singleton. So these things mean so much. But say like, I don't think it, it requires lots and lots of training. But you know, I go back 20 years did I get this, I don't think I got it. When I first started as a near like a, I would like to think that I was always caring. But I don't think I saw these things as they do now. And I think this is probably one of the things that happens. The older you get, you know, I kind of liken it to, you know, when I first when you first start off, your nose is literally on top of the baby. And then as you get a bit more confident and experience, you can stand back and you can let the resident have a go at tubing and then you can stand a bit further. And then you don't need to be in the room anymore. And you can get a bit further away. And then you start to see the big picture here. And you start to see actually, what does this mean to the family's going through the NICU. And you start to realize that with relatively small changes in our behavior, our body language, the words that we use, you can have a huge impact. You know, we could all spend our careers researching gut bacteria. If I'm honest, are we going to change the world, it'd be fantastic if we stopped neck. But, you know, this is something that all of us can do that has an immediate impact on on these families. And I know because I've kept in contact with these families, some of them for 25 years. And they told me they remember exactly how we made them feel when we had that discussion about the head scan, or we had a discussion about the chances that the baby would survive. And I think we we don't recognize that these small sort of interactions that we just pass off. It's just another ward round and I had a conversation, we don't recognize that that conversation is going to live with those parents for the rest of their lives. And so it's just about making us I think, a bit more thoughtful, respectful. And, you know, so although the Butterfly Project is this kind of nice thing. Like it's, it's kind of relatively uncommon situation of neonatal death, in between pregnancy, really, it's the real importance is about the kind of generic, transferable kind of concepts that it's about, it's about how we should behave as physicians and nurses, to the people that we're looking after.


Ben 27:42

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Daphna 28:00

I'm struck by a few things, I have a personal interest in perinatal palliative care. And really, it's still very much a blossoming field. But the Butterfly Project, you guys have been working on this for four years. And so you were really at the forefront of bringing palliative care into the neonatal ICU. And so I wonder, you know, what, what is what was it like to be kind of a pioneer pioneer in the field? And my second question is, I, the the bulk of perinatal support, and even conferences, is actually coming out of the UK. And so I wonder why, you know, we're trying over here, across the pond, but but all of the, you know, major work and a lot of collaboration is coming from the UK.


Speaker 3 28:58

I don't know, I don't really think of myself as a pioneer. I mean, I think of myself as an opportunist, like I saw a kind of fascinating area that interested me and I got into it, and it happened to, you know, to roll and be successful. About 10 years ago, I submitted a couple of abstracts to the to the AAP SPR meeting in the States, I can't remember which ones they were, both of them were rejected. I went to the meeting. And I stood there looking at about 500 posters, on kind of audit projects and all this kind of stuff. And I thought, how could how can people be so limited to like, to my qualitative abstract down, but I think it's because physicians don't get qualitative research. Like if there isn't a p value there, you know, then people go, Well, you just spoke to a few people. Why is that important? And they see, well, you only spoke to 17 parents, whereas I've done this study, and I recruited 2000. And I think what you don't realize is that these themes are the same for all of us, right? All of your parents in the states would come up with the same set of themes, you'd Don't need to speak to 100 people, but I think primarily physicians don't get qualitative research. And maybe that's a bit different in the UK? I don't know, I, you know, I haven't practiced enough in the US to know the differences here. So I can't say why it's necessarily different in in the UK to other places. But I mean, I recognize that when I go to other countries, I'm not talking about the states here. But even if I go to, I know Latin America or other places, I guess medicine is a bit more hierarchical. Like I would say, it's not hierarchical in the UK? Of course it is. But I think particularly in our unit, we've tried hard to squash the perimeters a bit flatter. I'm not going to pretend that it's flat, because of course, it can't be like how can a new nurse feel on the same level as somebody like me who's been on the unit for 20 years, but you know, we work hard at being, I think, normal and friendly with each other, you know, we're first name terms with all the senior nurses, some of the senior nurses I've worked with for 30 years. Now, some of them were the nurse in charge when I was a baby resident. And that's kind of funny to be to work with people for so long. But I think that kind of familiarity is not the right word. But I think the kind of friendly nature of perhaps how we operate makes it easier to do to do these things, you know, I can't say to my residents and fellows, just call me Nick, it takes about six months to stop, you call him, we'll call doctor or professor or whatever, but I think kind of like just being a bit more normal. And that there is something different about doing the innate simple, and pediatrics that that requires you to be like that you can't be this kind of pompous sweat, that you could be if you're an adult surgeon, minding to be called, whatever you want to be called, because it just doesn't work. And in that setting, and and actually, life is so much more fun. If you can just be a normal person. And, you know, when when residents and fellows said to me, I, I don't want to say to this man, you know, I have babies just died. And I'm scared and and what should I say? And and often said, we will just imagine this is your mate, and you've met them down the cafe and their babies died? What are you going to say to them? And they say, Well, I probably will say, Oh, my God, that that must have been awful for you. I'm really sorry. Would you like to talk about it? I said like, well, you could do that the parents here, right? You don't need to go on a counseling course or a psychology course. You can just be like a normal kind of human being and empathize that this is a terrible situation. And can you you know, what, what can we do? So? Yeah, I don't know why it's different. The UK I agree. Like we have got some great societies. And there's some good, really good work looking at this. But yeah, I don't know why it might feel different to the US at this point in time.


Ben 32:51

I wanted to talk a little bit more about the philosophy and the history of twins and twin pregnancies because I mean, there's so much literature about twins throughout history. And what's interesting to me with the Butterfly Project is that it's it's really on the opposite end of the spectrum when it comes to how twins have been viewed throughout history, right. I mean, there's, there's tribes in Africa where when twins are born, they know this will lead to a battle for inheritance. And so they sometimes have to choose a twin at birth. I mean, the Bible is notorious for the battles in utero of the twin start battling in utero. And they try to kill off each other and, and yet today, we have reached the point in the NICU specifically where twins are born together. And I feel like we expect them to live their lives together and almost die together of all ages. And the idea that there could be an asymmetry there is dramatic, and and very hurtful. So I am wondering, how do you reflect on on what the NICU can show history and society about, you know, how we should view twins?


Speaker 3 34:03

We were fascinated by twins, aren't we? I mean, that they're all over the over the media. You know, there's there's documentaries, you know, this kind of constant nature versus nurture debate. I mean, of course, it's it's an interaction between the two, but I mean, people love the ideas. Is this all down to your genes? Or is this down to your environment? And there's a there's an amazing Netflix documentary film, which is quite sad, actually, about these triplets were separated at birth in the 50s. I think maybe in Boston, I don't know where, but in some kind of cruel psychological experiment. They were then adopted into three different families with different socio economic backgrounds, and then they find each other when they're 18. I think it's called identical strangers. I mean, it is just gripping and disturbing and really sad. Because they find each other and then they're all traumatized because they've spent their childhood school Hang up apart. I mean, there are lots of stories of this. So you know, when you think of it in terms of the kind of butterfly project, you know, I'm now I guess, interested fascinated by what it feels like to be the sibling survivor, we have managed to speak to some of them as adults. And yeah, I think it's just really difficult to understand what it feels like to be somebody like that, who feels this part of them was is no longer is no longer there with them and how they relate members.


Ben 35:35

Do you know the I mean, you must know the story of Narcissus, right who love to look at himself in the in the river. And there's this interpretation of the myth. I mean, for the people. I mean, people must be familiar with the idea of Narcissus, who's fascinated by his own image in the river and falls in love with echo and so on. But beside the sannyas, has a version of the story where Narcissus was actually the surviving twin. And he was longing for his twin sister so much that he would go to the river to look at his own reflection, because he missed it, right. And this, I think this is like so beautiful, because it it moves away from this egotistic sort of person who's just as needed based on beauty, but just longing for his twin who's no longer there. And so I was wondering if in your experience have when you talk to these surviving twins in adulthood, what is it like to to have this void? And and how do they deal with it?


Speaker 3 36:30

I think they feel this constant sense of loss. And I think all of us who've who've now cared for parents who have suffered a loss, or even like maybe, you know, close family members, you realize you that loss, that pain never goes away. I think I think if you've never experienced that people think that maybe you kind of get over this, you know, you get to being an adult and you think Alright, well, you know, I've got over the fact that I was a twin, you never get over this, this is part of who you are. And this is why as I said, like I I became really kind of interesting, this this concept of identity. Like, as I say, it's something not something that you're ever taught by me what is your identity and this identity that you are a twin never leaves you, you never stop thinking about it. And, you know, the stories that I've I've heard of how the kids when they younger start to kind of come to terms the fact that they have this brother or sister and one of the moms tells me that she found her 10 year old doing exactly what you described, Ben sat in front of the closet in his bedroom, that was a mirror, right on the on the door, that closet, and he was sat there, and he was speaking to himself and the mom can appear around the corner and just listen to him for a while. And then she went in, she said, Who is speaking to? And he said, I was just chatting to Charlie, like, you know, the twin who had died. Sort of what we were talking about. I said I was just talking about my cars and my play things, you know, so I don't know when he was 10. And he probably had this idea, you know, for years earlier. So, yeah, I mean, I don't know how you conceptualize this. As you grow up, I just know that it really means something that matters to them that their twin identities is never lost. But of course, you're never going to know it. I mean, how would I know whether you hit if you guys were what they call kind of twins twins. If I walked down the street with you don't carry a label, do you that says I had a twin who's not with me. So yeah, I would love to do some film work with the twin survivors, you know, probably I don't know, maybe. But as soon as parents want that maybe probably kind of 8789 years onwards, just to hear from them. Because I know that parents really worry about this, you know, their worries, how am I ever going to went to I tell them that they were trained and how do I make it part of our lives. And all the families that I've met, have have done this successfully. But I think when that first happens, this is one of the things that you worry about, you know how to how do we tell them? How do you tell the other kids in the family? Right? So some of the babies we have in the NICU have older brothers and sisters, right? They know that there was a twin pregnancy and then then only one baby comes home. I mean you have to sort of tell them what happened. So this you know kind of memory making isn't just isn't just about us on the on the NICU doing photos of the babies together or hand and footprints together. This is about memories for the rest of your life. And so we have now got projects with people in humanities and arts. We're doing projects with parents and they're going out and they're collecting resources and making sort of collages and prints with the siblings survivors to help them create a sort of positive memories. Yeah. So it goes off. And you know, and I think one of the things that I want to do in the next few years is learn to take some of this stuff out of the NICU. Right? So, you know, the babies, the families are only with us for 1% of their lives 99% of their lives. They're not with us anymore. But you know, where they're at this really critical period. So how is what we do on the NICU? helping them prepare for the 99% of their lives that's lived without us being around there? And how do we how do we do that better than we're doing it, and then it perhaps


Daphna 40:35

what I what I love about that is, you know, obviously, multiples and in having surviving multiples are a very special population. And we can learn so much from this project about how we deal with all families who who have a baby who died in the unit or for siblings, who never got, especially during these pandemic times, who never even got to see the baby that they were expecting to become come home with them. And I think it's a reminder, I think the reason multiples will be surviving multiple. So potentially interesting is because we, we are we are seeing, right, the the parents, we're seeing the aftermath, we're seeing them for days to weeks to months afterwards, as opposed to so many families who have a baby die in the unit, and then they leave, right. And they go on continuing with their grief, but but we just the unit just keeps moving. And how much of this support that you know, we try or we could offer to multiples that we really need to offer to all families lose a baby in the amazing.


Speaker 3 41:55

Yeah, no, I think we could all we can all learn to be to be better at it. And as I say, We it needs to, it needs to come from working with the parents, because like, none of us could sit there in a room and come up with these eight themes. And when we have to listen to what the parents have to say to us. And and that's difficult on the NICU, isn't it? Because you're so running around like tubing, babies and doing gases that you don't have this opportunity to always sit and listen in the way that we would like to and and the babies get better when they go home. And then the next one's you we don't get this time to kind of sit and reflect and learn from parents perhaps. So that was the opportunity, I think that we had in this project was just to kind of sit back and say to parents, right, come tell us what's it like?


Ben 42:40

I wanted to ask you if if you've encountered this because again, there's a lot of interesting historical literature in regarding twins, and the concept of birth, right? There's many cultures for which, which twin is the is the firstborn matters tremendously. And there's all these I mean, as a doctor, it's fascinating. All these rules that certain cultures have as to the firstborn is the twin that takes the first breath. Some of them thinks, think or argue that the firstborn is the second twin, because it probably was the first one implanted. And then the second one came after. I think all that stuff is very interesting from a historical standpoint, but I am wondering if you've seen through your work, where the idea of maybe 20 A passing away over Twinbee made a difference. And culturally, was that an issue?


Speaker 3 43:30

Right? I don't honestly think so. I mean, one of the things that struck me is that the when you speak to the fetal medicine team, they always talk about twin one being the presenting twin, right? And twin two being the other twin. But when you do a C section, right? They flip because the uppermost twin is almost always delivered first. So what was two in one becomes two in two. And I don't know if any of you have ever been in this kind of nightmare scenario. I mean, I we had a we had twins where one twin had had renal agenesis at 28 weeks, and the mom went into labor. And she had requested no resuscitation for the baby with with no kidneys. And the babies were born. And I remember the fetal medicine guys handing me 21 Without kidneys. And I looked at the baby and I thought well, actually you kind of look normal to me. And being terrified. Oh my god, like do I? What if I resuscitate the wrong twin? I mean it was absolutely terrifying terrifying. I took the baby to the unit we've got the scanner out to make sure that we had had the right and the baby thankfully didn't require resource but then slowly you know didn't breathe very strongly because upon me hyper plays you in it wasn't an issue. But yeah, I mean it's identity whose twin one whose twin two who comes first? And then of course if you have twins When, or, you know, Twitter name your policy team, you may end up with one twin who's very much bigger than the other. But he may not have been the first one. You know, he may be the the older twin may be the smaller one. I mean, yeah, you're right. So yeah, it's it's a very kind of mixed up thing, but I didn't hear from parents. So we didn't hear from parents that that was ever a big issue for them. They didn't, they didn't say all this one was the bigger one or the order one Nike that didn't appear. And interestingly, we, we didn't speak to a terribly diverse group, but I mean, lots of parents would have had religious views and values. And, and again, religion didn't really appear to be a big theme here at all, like they conceptualize all this at kind of outside of their religion, the the only kind of religious differences that that kind of cropped up, have been around the use of the butterfly as a symbol. And of course, in in Islam, you wouldn't use a animal to represent a dead being. Right. So in sort of the Middle East and units that have adopted the project, they have a purple heart, because the parents wouldn't have wanted a purple butterfly. So I think the purple butterfly works great for predominantly westernized Judeo Christian culture, because it has been used as a symbol of, you know, life and rebirth and, and loss. So I think it works great, but it may not work. So well in other cultures. And I know from doing the online course, that naming again, is is quite different in other cultures. So in lots of African cultures, the the babies don't get a name until they're back in the in the village with the families and then the elders name them. So yeah, I think we always need to be aware that we will get a bit, we might all get a little bit stuck in our own predominant sort of, you know, religious conventions, or whatever. But the these may differ in different kind of cultural settings and countries.


Daphna 47:05

Yeah, it's obvious that you've spent, you know, a good portion of your career trying to put yourself in the shoes of the families. And certainly, you've had a recent experience where you've become a patient yourself. I'm wondering if you can talk to us a little bit about how being a patient and a physician it's a it's a, it's a difficult situation? Certainly.


Speaker 3 47:34

Yeah. It's it's been a pretty unexpected turn of events. Let's say that very British unexpected. Yeah, I have my latest plastic syndrome, I read a blog. So anybody is welcome to read my blog, and has been very open about it. Because that was the easiest way of actually keeping everybody up to date. I kind of got a bit bored answering text messages. And I thought, I'll just put it in the blog, and you can all read it, and everybody else can read it. So I've written a blog that people tell me it's vaguely amusing of my own journey. But yeah, I got diagnosed about a year and a half ago in February. I probably been feeling a bit tired, but I didn't really think that there anything wrong by my family. So you look a bit pale. And I gave them a bit of a mouthful and said look, I'm 1,000,008 ologists and I will work my ass off and not surprisingly pale and never see sunlight. Island tired exactly what's the problem? That's what you're supposed to be if you neonatologist and you know, I probably just get a blood test and I went to work one day, I skipped the morning meeting, I thought I'd just get down to the emerg and I get some to do my blood. So I walked down there and they did my Bloods. And before I knew it, I was being seen by the hematologist and being told that my plate for campus at and my hemoglobin was was 85. And I had a few blast cells in my blood film. And so I knew that there was something pretty serious going on. And to cut a long story short, I then spent six months pretty anemic and tired but still kind of working low dependency and then had a bone marrow transplant in October. And that kind of went okay, I didn't obviously die from neutropenic sepsis, although I have to say, lying on a bed in a laminar flow room and the hematologist coming in and saying you have a neutrophil count of 0.0 and a plate and the plate the count of three. Like you literally don't want to get out of bed cuz you think oh my god, if I get out of bed for pee and I tripped over them, then I'm dead. And I can just lay there kind of or like not moving and having my transfusions, but it went alright. And yeah, and now I'm kind of like putting myself together with a bit of graft versus host disease and things. But even what, how does that make me reflect on all the other stuff? I think one of the things that I kind of really miss and I'm not a touchy feely And by any stretch of imagination was was actually any kind of physical comfort, it was really bizarre, you get your blood pressure measured, like every four hours. And actually I kind of look forward to it. Somebody came along and held my hand and put a cuff around me and took it off and straighten out my my PJs and, you know, after you've had a bit of puking or something that will come along and just kind of wipe the hair back from your eyes. And it was actually quite nice kind of human interaction, because otherwise, we're sat in this kind of four by four room, you know, on my own. So I really thought about, yeah, that kind of, like just being with another human being was kind of quite nice. I mean, I was fine. I actually quite enjoyed having a bit of peace and quiet for four weeks. But you know, I recognize that. But I think the other thing that I reflected on was, was things like identity and, and, and loss. Right, so my identity is your personal identity. As a neonatologist. It's all kind of wrapped up with your professional identity, right? And your family know what you do your friends, don't you do your partner's know what you do, you're seen as this kind of a the heroic person who goes around saving babies lives, we all have a bit of a hero complex, we may not want to admit it. But we all kind of quite liked the idea that we do something that is of such profound importance to families. And, you know, I'd always seen myself as this guy who could do it all and then suddenly having that taken away from you. I don't think I'm ever going to get back into the NICU because I've been out of it for too long now 18 months, and so tube to baby and did stuff. So like that, you know, I feel my identity is not quite what it was, you know, so you kind of slightly grieve that loss of identity and when you grieve like not being in the workplace and being roommates. So that that was important thing, but I think the other bit is, is loss. And you tend to think of loss as this one catastrophic event, and then you slowly get better from it. Like you get your diagnosis and then you slowly get better, or you lose a baby and you slowly come to terms with but it isn't the kind of losses like losses like that, can you get the big splash in the pond to start off with but then there are all these ripples of loss. So then I lose contact with my mates at work, I lose contact with my research projects, I lose contact with the residents and fellows that I've bought through built rapport with you, little bits keep on happening. And I think the same for parents as well. It isn't just that you lose a baby, you lose your identity as being a mother or you lose your identity as being a twin parents, you lose your ability to go back to work, you lose some of your friends, because some of your friends just don't get it and they don't want to talk about babies dying. So, so last isn't this kind of one off thing that happens and then you kind of slowly get used to it. There's a whole kind of series and stuff. And I think it's really taught me that. Yeah, we should never, I guess judge or try and determine how any single person parent is going to deal with this. There isn't any one size fits all that's going to make it work. But you're I mean, how having sort of an honest myself has has really made me can reflect on on this. I guess when it when it first happened, and I was laying there in the bed, kind of puking up and stuff like that, I thought back to my very first job in pediatrics, which was in pediatric oncology. And it kind of broke my heart then to see little kids with cancer. And you know, I remember some of the kids who died like I, they're, they're kind of etched in my brain still. And, and as I was laying there thinking, Oh, well, feeling a little bit sorry for myself, I was thinking, Oh my God, how do you go through this as a kid? And how do you go through it as a parent, watching your kid go through chemo? When needle sticks a minute? You know, there's no easy answers, but I think it really did make me reflect on some of the things that I've done over the years and say, I think I I was always kind and sensitive, but it does make you kind of appreciate how much these these things mean and how the conversations take place.


Ben 54:13

It's interesting, you mentioned the, the hero complex that we have as neonatologists. And and I do think it's true and and I and I don't know why I'm so so bent up on history today. It's not Yeah. But it reminds me of this idea of, of really ancient Rome, where the military sort of generals right would would be paraded after a victory through the streets of Rome, and they would be adored and they would be cheered and there was in the chariot with them like a slave behind them that would whisper in their ear memento mori you like you are mortal. Remember that? This is this is not normal. And it's funny to me that we say that to parents every single day. We say hey, things are good. going well, but yeah, it could turn at any moment. And I feel like sometimes we don't tell ourselves as physicians, we're blazing like, I'm going to do this until my 70s. And point in time that we remind ourselves, this could be taken away at any age. And they think that this is something that we should focus on a bit more especially, I'm thinking with trainees where it's like full steam ahead, and maybe give them some some time to say, hey, reflect a bit on, on how fortunate you are to be here. And how potentially this could stop at any moment.


Speaker 3 55:32

Yeah, I mean, you're I mean, you never think that anything's going to happen. It's it's like a car crash. I mean, I, I just went into work one day expecting to work the night on call. Five hours later, somebody was drilling holes in my in my bone, sucking up bone marrow, and I was busy texting my colleague saying, I'm really sorry about this. I wouldn't be able to do tonight's on call. Can you do it for me? I'm


Daphna 55:59

probably sure I'm not sure if I can do today.


Speaker 3 56:03

I didn't ring them until two o'clock in the afternoon. I can make it. I know I can get I know. I have to go to clinic tomorrow. But I think I can probably get but I can probably still get better five minute rounds. Yeah, no, we we we do kind of think we're invincible. And I've been lucky like I've I've always enjoyed my work. I've never struggled with any mental health issues and those things, but these, these things just come out of the blue. I kind of think that I've always done what I wanted to do and enjoyed it. And I didn't, you know, have to leave work with any kind of huge sense of regret, that Oh, I didn't achieve what I want to do. So I was lucky in that way. But you're right. I think all of us in medicine, the problem with medicine is it's such good fun. It's so engaging, that you don't tend to develop things outside work. And you know, all of us struggle with the work life family balance, don't we, I mean, then I read today, somebody said, You shouldn't be calling it balanced, you should be calling it the seesaw. Like because you never balanced it. It's always a seesaw. Like, you're always kind of flying one way or the other. It's never balanced. All of us, all of us struggle with that. And then you're right. I think that's why we find it so difficult when something happens because medicine does become a life. You know, it's a bit sad, but unfortunately for many of us, it's such good fun that there isn't much else between the hospital and your home is that you you and maybe all of us do need a kind of a wake up call to to stand back and look at things and and take it all in but yeah, I I didn't have any an easy answers. I think I would always say that it was just do what you enjoy. Like if you enjoy it, then then do it the point you don't enjoy it, then then you need to do to do something else. But yeah, I think I got lucky. I've I've had a great career. And I do as I say I kind of grieve the fact that the job that I love was kind of ripped away from me literally overnight. But, you know, I'm I'm sort of, I guess determined enough that I find other things other other kind of research pursuits? To do. But yeah, maybe we just we should spend more time. I mean, you know, you work hard at school, you go to university, you go to med school. Yeah. It's like this kind of running that is that hamster running on that wheel. Isn't it as fast as you can, because you dare you. I want to publish that paper and I want to miss out and I want to get their job and you keep flying around it without stopping to think sometimes.


Ben 58:27

It's like a highway with no exit with no rest stop. Yes, keep going. It's dry faster. It's exactly what we're coming to the end of the show, unfortunately. But I wanted to get definite. I'm gonna let you close out the show. Go ahead.


Daphna 58:40

Well, something that's that is obvious. Through this conversation and your blog, and just your, you know, ebbs and flows of your engagement on and Twitter, you know, we follow you so closely. And, you know, it's obvious that you you're finding a way to redefine yourself. And I think actually, that's something we should talk about more in medicine as well. And maybe it's not illness, right? Maybe it's a job that doesn't go the way you expect or it's family or some other. You know, the research you've dedicated your life to doesn't turn out the way you expect it to. And it seems like physicians are our struggle with redefining themselves. And it probably has something to do with the the identity and the hero complex. But I imagine more of us than we expect we'll find that we will have to redefine ourselves at some point or another. And how did you come? How are you coming to terms with it? You know, what are the first steps I guess, in making that progress?


Speaker 3 59:50

I think I've been kind of allowed myself over the last few months particularly to be sort of almost dragged more into baby loss because I've started to realize how important this is and then actually how you can make a big impact without getting your 5 million pound grants and things like that. So I think I've been lucky, like, I've had other pursuits. But you're right. I mean, all of you guys. And a lot of people listening are going to work out how to do this. Because we're all living longer, we're all being told that we can't retire as early as people used to retire, you got very long careers ahead of you. And you might love, you know, sticking tubes and blinds into babies now. But, you know, when you get to being 60, it's, I still have intubating, like, I always thought was kind of cool. But I long since gave up putting IVs in the me, my colleagues still not putting the IVs in, but I think I can, I can move on from that. But yeah, I think all of everyone needs to be aware that that you have to have some sort of plan or recognition that there is going to get to a stage in your career where maybe you need to be looking at different avenues and pursuits. I'm 60 Next year, and I hope to work another 10 years, but um, I no longer expect that I should be jumping out of my car at two in the morning to go and enforce a baby like that doesn't seem right. You know, the parents gonna get a bit scared when I kind of turn up with my walking stick and can't find the right glasses to put the tube in like it, you know, there has to come a time when you have to work in a different way. And I don't think the health systems are really geared up for that. I mean, they want you to be a certain type of person and they don't maybe value the other things that you can bring. As you get a bit older in your career. Like, I know that I still have a lot to offer. But I mean, sticking IVs and to fight from the grandbabies isn't isn't going to be one of them anymore. I mean, the reason why it should be. So again, I mean, I don't know what to say to people, but I think you know, all of us need recognized unfortunately, that aging is going to happen, as is as his death and loss. There's no point, you know, imagining that how things work when you're 40 is, is going to be how it works. When we're 60 we just have to be cognizant that things are going to change and and, you know, step back and spend a bit more time reflecting about what really where you should be going next, I suppose.


Ben 1:02:10

I think we shouldn't on that. That's enough.


Daphna 1:02:13

No, I know. I mean, we we so appreciate your time. We didn't get to as expected even a third of the things that we wanted to talk to you about. We may have to do this again.


Ben 1:02:29

Nick Hamilton, thank you. Thank you so much for making the time for sharing for sharing your thoughts. Your perspective, this was phenomenal. And we will have links to your blog to the butterfly projects link and all the different endeavors you're spearheading on the episode page and like definitely said we're looking forward to Episode Part Two.


Speaker 3 1:02:48

The future. Yeah, great. Thanks for inviting me. It's been good fun. Thank


Ben 1:02:52

you. Thank you for listening to the incubator podcast. If you liked this episode, please leave us a review on Apple podcast or the Apple podcast website. You can find other episodes of the show on Apple podcast, Spotify, Google podcasts, or the podcast app of your choice. We would love to hear from you. So feel free to send us questions, comments or suggestions to our email address NICU podcast@gmail.com. You can also message the show on Instagram or Twitter, at NICU podcast or through our website at WWW dot v dash incubator.org. This podcast is intended to be purely for entertainment and informational purposes and should not be construed as medical advice. If you have any medical concerns. Please see your primary care professional. Thank you


Transcribed by https://otter.ai


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