EP. 28: THE BRAIN AND ALL THAT MOVES US

WITH JAY WELLONS

Sep 14

WITH JAY WELLONS, MD, MSPH

A pediatric neurosurgeon discusses lessons on courage and resilience from having cared for some of the most complicated pediatric diseases.

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Episode Summary

Pediatric neurosurgeons manage some of the most complex diseases in children, operating on the delicate and precious organ that makes us essentially human. Dr. Jay Wellons is Chief of the Division of Pediatric Neurosurgery at Vanderbilt University Medical Center and the author of All That Moves Us, a memoir that offers an intimate and gripping account of the triumphs, terrors, joys, and pathos he encounters on a daily basis. In this episode, Dr. Wellons joins us to discuss his path to neurosurgery by way of English literature and family medicine, his faith as an anchor amidst his challenging work, and reflections on what the human dramas involving the most vulnerable children he has cared for has taught him about resilience, courage, and grace under pressure.

Jay C. Wellons, MD, MSPH is Professor of Neurological Surgery, Chief of Pediatric Neurological Surgery and Professor of Pediatrics at Vanderbilt University Medical Center. He was the Site Investigator for the private and NIH-funded Hydrocephalus Clinical Research Network (HCRN), and continues as the primary investigator for ongoing studies related to HCRN. His additional research and clinical interests include the role of neuroendoscopy in the treatment of pediatric brain tumors and hydrocephalus, improving surgical outcomes in Chiari and Chiari-related disorders, and anatomic and surgical studies of the brachial plexus and peripheral nerves.
In this episode, you will hear about:
• A discussion of the range of procedures pediatric neurosurgeons perform - 1:58
• How a fascination with neuroanatomy drew Dr. Wellons into neurosurgery, and how his literary studies have impacted his patient care - 3:58
• The origin of Dr. Wellons’ book All That Moves Us and his experiences with a personal health crisis - 8:59
• What it is like to operate on one of the most intricate and delicate parts of the human body - 18:00
• How Dr. Wellons deals with the weight of unsuccessful procedures, and how he carries on - 27:51
• Forming relationships with the families of very young and often very ill patients - 31:12
• A discussion of spiritual faith and its place in the life of a surgeon who sees so much tragedy - 35:27
• Dr. Wellons’ advice to students, trainees, and clinicians on how to stay connected and hopeful in the face of seemingly insurmountable challenges - 40:52
Henry Bair: [00:00:01] Hi. I'm Henry Bair.
Tyler Johnson: [00:00:03] And I'm Tyler Johnson.
Henry Bair: [00:00:04] And you're listening to The Doctor's Art, a podcast that explores meaning in medicine. Throughout our medical training and career, we have pondered what makes medicine meaningful. Can a stronger understanding of this meaning create better doctors? How can we build health care institutions that nurture the doctor patient connection? What can we learn about the human condition from accompanying our patients in times of suffering?
Tyler Johnson: [00:00:28] In seeking answers to these questions, we meet with deep thinkers working across health care, from doctors and nurses to patients and health care executives. Those who have collected a career's worth of hard earned wisdom, probing the moral heart that beats at the core of medicine. We will hear stories that are, by turns heartbreaking, amusing, inspiring, challenging and enlightening. We welcome anyone curious about why doctors do what they do. Join us as we think out loud about what illness and healing can teach us about some of life's biggest questions.
Henry Bair: [00:01:03] Pediatric neurosurgeons manage some of the most complex illnesses in the hospital, operating on the delicate and precious organ that makes us essentially human. Our guest today, Dr. Jay Wellons, is chief of the division of pediatric neurosurgery at Vanderbilt University Medical Center and the author of All That Moves Us, a memoir that offers an intimate and gripping account of the triumphs, terrors, joys and pathos he encounters on a daily basis. In this episode, our conversation traverses richly diverse and surprising terrain from a discussion of medieval English literature to a meditation on the spiritual dimensions of patient care, to reflections on what the high stakes human dramas involving the most vulnerable children Dr. Wellons has cared for has taught him about resilience, courage and grace under pressure. Dr. Wellons, welcome to the show and thanks for being here.
Jay Wellons: [00:01:56] Thank you, Henry. Absolutely honored to be here.
Henry Bair: [00:01:58] So I'm going to kick off with a really basic question, and that is, what is pediatric neurosurgery? I think for a lot of people, the term will immediately conjure up an image of brain tumor, which is an important part of pediatric neurosurgery. But as your book illustrates, there is a lot more to what you do. So can you briefly share how you would characterize the work that you do?
Jay Wellons: [00:02:25] Yeah, sure. Well, I think about pediatric neurosurgery in a sense, like in the very center is kind of our public health mission. What I mean by that is handling patients that come to the emergency room with brain tumors or blood clots in the brain from vascular malformations or trauma or skull fractures or spine fractures or nerve injuries. So trauma is a sizable part of what we do. And also patients that present with hydrocephalus. One can argue that it's one of the reasons why pediatric neurosurgery is a specialty field is because in the 1950s, when the shunt was designed, a lot of these kids that were passing away before now started to live. There's a whole population of people that kind of rose up in order to take care of them. So those kind of urgent emergent things, I think, about being right in the center of this public health mission. And then I think about another circle around that where our kind of more elective things like epilepsy surgery do an operation to take a kid who's had issues with seizures. And by identifying where the seizure focus is, being able to turn them either into somebody who's no longer having seizures or whose seizure burden is much reduced and craniofacial abnormalities where the the skull is fuzed in an abnormal way so that there's not only a possibility of brain pressure, but also the social stigma that comes with an abnormally sharp head.
Henry Bair: [00:03:58] Yeah. That's a really wonderful explanation of the incredible range of work that you do. Can you tell us what first drew you to a medical career and to a career in pediatric neurosurgery?
Jay Wellons: [00:04:13] Well, sure. So I basically I was an English major at University of Mississippi, had the opportunity to ride and take classes from some really terrific Southern writers back in the day. One of the important things in my family that I learned and that we pass on is kind of the desire to whatever it is that we do, we want to be able to help people in some way. And so kind of with that in mind and influence of my father and influence of other people, I decided to go into medicine really to kind of learn more about the human condition and what's going to be a family medicine doctor and live in rural south Mississippi and get paid in poultry and vegetable produce and just do what I saw when I shadowed rural physicians, you know, treat hypertension, treat issues with depression around in the nursing homes. "Boil the towel, Mabel. We got a baby to deliver." I mean, it was, I think, probably almost a pastoral or an idealized life that I had pictured. And that all was great and fine until I got into the anatomy lab and I saw the brachial plexus, and it reminded me of this beautiful macramé.
Jay Wellons: [00:05:22] And the brachial plexus is, as you know, Henry is a series of nerves that come out of the neck that they jumble up into a predictable pattern and then jumble into the nerves that go to the arm. And so from seeing that macramé and and then making my way in into the spinal cord and then up into the brain and the cranial nerves, it really just. Really fundamentally changed what I wanted to do. I spent a lot of time trying to talk myself out of doing neurosurgery and dance with a lot of other fields. But I can't. Kept going by our 16 at the medical school that I was in back in Mississippi and leaning it up to look just through the door to figure out what case they were doing. Doesn't matter what I was on oncology or vascular surgery or internal medicine that sneak some scrubs on and go check it out. So it was this interesting, probably idealized version that brought me into medicine. And then all of a sudden, before I know it, you know, 25 years later, here I am in my role as a pediatric neurosurgeon.
Henry Bair: [00:06:30] That's. Wow. Yeah. I'm curious because I also studied the humanities in college. I was I studied medieval literatures and I came into medicine because it was a perfect combination to me of the sciences and the humanistic parts of caring for a person.
Jay Wellons: [00:06:47] So we quote Chaucer together: "Whan that Aprill with his shoures soote / The droghte of March hath perced to the roote/ And bathed every veyne in swich licour / Of which vertu engendred is the flour" I can keep going, but I won't do it to you.
Henry Bair: [00:07:00] I am really loving this right now. It's not every day that we get to talk about middle English, although I do have to say that my area of focus was an earlier period of English.
Jay Wellons: [00:07:10] Oh nice.
Henry Bair: [00:07:11] So Anglo-Saxon and Celtic literature is what I did most of my work on. So Beowulf is what I am more comfortable with. I remember reading that in the original old English, which if anything, is even more niche yet. Tyler too. Actually during college he did a lot of work in religious studies and American studies, so I'm trying to say that it's delightful that we're all in similar company here. But back to the question that I was going to ask, which was in what ways did your undergraduate studies in English literature subsequently impact your approach to patient care?
Jay Wellons: [00:07:49] Well, I think it it adds a substantial amount of empathy, this concept that people have been writing about medicine. For many, many, many years, you know, from Chekhov to Cushing to Aequanimitas. There's a lot of real drama in medicine. I mean, there's a lot of stories here, and there are stories of life and death and treatment and prayers and also and miracles answered and all kinds of emotional places that people have to go into when either they or their families or their children are ill. So I do think that being able to look back on a humanities based background is really important. I mean, don't get me wrong. I mean, you want your virologists and you want people to come up with vaccines for pandemics in ways to move the understanding of the basal ganglia and the direct and indirect pathways of movement. And those things are critically important. Medicine wouldn't be the same without that, but I do think there's room for people who have different backgrounds, too, because I think it helps oftentimes with empathy and communication.
Henry Bair: [00:08:59] I think it's really fascinating that you go from an interest in family medicine to neurosurgery, which as any medical student and any clinician would know, is just about the biggest pivot you can take in medicine. Family medicine and neurosurgery are the furthest apart in terms of the work involved with family medicine. You take care of a patient and his or her family over the course of their lives. Whereas with neurosurgery, at least, the stereotype of it is that you get called upon to perform this really technical procedure that no one else can do, and then you leave after you finish. But as your book illustrates, that is really not the case at all. Your book is packed with so many stories that illustrate the deep connection you form with your very young patients and their parents. I'm wondering if you can tell us the origin story of this book and what you hope to convey to your readers.
Jay Wellons: [00:10:12] Yeah. Well, that's a that's a really great question. All the times in my life when I've sat with the family and showed them an x ray on a light box in the old days or a computer screen where it shows a tumor. And the tumor is kind of unfolding as the as you scroll through and you say, there's a tumor here and we're going to need to take it out. And these are the risks, the benefits, and this is when it's going to happen. Instead of me saying those words, it was me hearing those words. And I had a tumor that was in the top part of my hamstring. And bottom part of my pelvis was about the size of a tennis ball. It was really thought to be malignant based on the imaging and some of the information that was garnered from a biopsy. And so that was a full on existential threat for me. You know, I can remember grabbing a friend by the collar and shaking him and saying, you know, I've taken out hundreds of pediatric brain tumors for a living. How can this be happening to me? Is there something about works and faith not to get all into the theological construct of it? But, you know, I named my tumor Wormwood after C.S. Lewis character from Screwtape Letters, whose design was to bring down bring down mankind. Don't worry, we're.
Tyler Johnson: [00:11:33] All about the theological constructs on this podcast, so you're actually in great shape.
Jay Wellons: [00:11:37] Okay, good. Thank you, Tyler. So basically, it came out with a lot of muscle around it and you went from non to being still. Now on the positive side. Obviously it was not malignant, it was benign. And I remember having the pathologist show me again, show me again how this fits with the benign pathology because and so thank goodness for their patience and kindness. But but then it was about healing for those in the medical world that had a wound vac, it was a big old gap and I had to stay still before I could learn how to walk again. That turns out the bottom part of the gluteus and the pelvis and the top part of the hamstring is really important for gait.
Tyler Johnson: [00:12:19] It sounds like they almost literally took your pound of flesh.
Jay Wellons: [00:12:23] Well, they did. Yeah, it was it almost felt like the character, since we're talking about English. It was a character. I think it was in Voltaire, in Candide. Maybe you had part of the gluteus muscle removed for various reasons, I think. But I'll tell you, man, that hamstring, those muscles, important brigade. So I was basically still wide healed for like two and a half months. And so it was my sister who said, you know, who's this wonderful kind of enabler in a positive way, said, you know, you should write some of these stories down that you've been talking about for all these years. And so I ended up kind of doing this just an outline of stories that I can remember through my life from medical school. You know, the lady with the splenic arctic aneurysm, the hatchet guy who's actually in the story, the fishhook and the eyebrow guy, you know, that stuff I can remember just jotting down. And I had some records that I kept and then I just started writing and I had one piece come out in the New York Times that was a funny piece, and that garnered a lot of fun emails from people I knew across the country saying, Hey, it's a funny writer, you know, that's really great. But the guy that was my editor at the time, a guy named Peter Catapano, it turns out his shtick was in helping new writers come along and write more. And so Peter said, Hey, you're a pediatric neurosurgeon. You've written a funny story. Why don't you write a serious story? I know you've got serious stuff. So I did. And the gist of that story was the little girl that I cared for in Alabama in my first year of practice.
Jay Wellons: [00:14:00] And the basically the medevac helicopters weren't flying because the weather was so bad. And I was talking to the ER doc and we didn't have much time left and because of my influence and my dad had a picture on my desk, he passed away many years ago, but he was in a flight suit standing next to us. That for made me think about the military. It made me think about Blackhawk helicopters, made me ask the ER doc if they're Blackhawk helicopters at the base nearby. We're still flying low. Behold, 20 minutes later, my coffee cup on my desk starts to rattle the window rattles. I look outside, there's a Black Hawk hovering over the children's hospital with a girl in it. So we get her to the operating room and and she recovers slowly, but over time. And I just saw each step of the way of her recovery back to walking back to school, back to the dean's list, back to being a mascot, back to winning a Ford Award, then to college, then to graduate school. And years later, you know, she she didn't need to come see me anymore after a few years of follow up, but I would get letters and updates from her family. And finally she sent me. I was here in Nashville. She sent me an invitation to her wedding, and she was just saying how grateful she was for me, but also for the soldiers that flew her there. I mean, I remember the soldiers, I met them in the ER at Children's Hospital there, drenched, just soaking puddles of water underneath them because they've flown through this massive storm to get her there.
Jay Wellons: [00:15:25] And she just, she just had such, this degree of gratitude about all that had to happen to get her to where she would be married and then one day have our own family. And and I remember thinking there how grateful I was to her, to Jensen. That was her name because of what she taught me, how hard to push, what to expect from others, how much to think inside and outside of the box. And so that piece came out in a few months later, and it was right when the pandemic was starting to kind of move from Wuhan to Italy. And so there was a lot of data coming out. A lot of people were like tweeting how to treat it and what they did. And we didn't kind of we didn't have any studies. And there was just there's a lot of kind of apprehension in the medical community and a lot of anxiety in the world, the non-medical world, too. And what I remember from that time was just a lot of communication to me about how important it was to feel that hope. And so it was really that. It got me thinking like, my goodness, man, I have so many patients over the past 25 years that I've cared for and they are all about resilience. I mean, there is some stories are sad and some stories are joyous beyond belief. But there is a ton of grit and a ton of resilience and a ton of grace shown through these kids and their families. And so that's when I really started thinking about, You know, writing the book. So that's the origin story.
Tyler Johnson: [00:17:04] So I'm a medical oncologist, right. So that's pretty heavy duty medicine. We give chemotherapy and we have patients who get really sick and all the rest of it. But the the saving grace for my personal psychological health of medical oncology is that there's always a remove, right? So I see a patient in clinic and then it usually takes a few days to get the biopsy results back and then it takes a and then we talk about it in tumor board and then we, you know, I mean, there's time to sit in my office and reflect and weigh the options and and, you know, go through narratives in my head. And even if I make a decision that I later don't agree with, I can usually go back and make a different decision. And like there's a lot of room, right? So I have to say that the one thing that just makes my palms sweat is the idea of being inside someone's body. Working on their vital organs during a surgery. And now something starts bleeding. And I have to make a decision right now because if I make the right decision, then maybe they're saved. And if I make the wrong decision, maybe they die. And that would seem true to me if I were taking their gallbladder out. No offense to surgeons who take gallbladder out, but then if I think about doing that in someone's brain, let alone in a kid's brain, I just want to go hide under a rock.
Tyler Johnson: [00:18:31] Because I just cannot fathom the, like, iron constitution that it takes to do that. So I guess all of which is a way of saying, how on earth do you cope with that? I mean, you know, like Henry Marsh, for instance, writes really pretty, almost bleakly sometimes about how even the best of surgeons things just go wrong sometimes. Right. It's just the nature of the human body. It's the nature of mortality. So I just how do you grapple with that? It is genuinely hard for me to imagine.
Jay Wellons: [00:19:06] Tyler, I would say that I have the same degree of respect for unfurling the chemotherapy train on patients, because once oftentimes once you start that, that train is leaving the station. And so I think about, okay, well, if there's bleeding, I can stop it. But I think that probably just takes a lot of wonder and respect in all directions for all the different facets of caring for patients. You know, some of it is just training over and over and over again. You know, back when I was a kid, I remember my dad was a pilot. And I talk a little bit about that in the book. And I used to fly with him and I was like, eight, nine, and I'm flying a Cessna with him and I'm up there flying and looking at the horizon and looking at the altimeter and everything. All of a sudden we just start to lose a little bit of airspeed and lose a little bit of altitude. And my dad's like, You've got to work the problem. And so did he feather the props a little bit? Did he turn the flaps down? It would just kind of force me to kind of work the problem. And I do think that I mean, everybody talks about the similarities between flying and surgery. I would say that there's some similarities and there's some differences, but definitely the checklist mindset, the Tom Wolfe, the right stuff.
Jay Wellons: [00:20:27] You know I've tried A, A is not working. I've tried B but B's not working. I've tried C. Tell me what's next after C. That's D, but but the point is is that there there is after a while this mentality and then when you train, you know, you train to think of, okay, where is that bleeding coming from? Get the sucker down to the bottom of the field to clear it. And then there's probably going to be a feeding vessel right there. And I can stop that with either A, B, C or D. So I guess some of it is just doing it over and over again. But but I will tell you. And I'll talk about this a little bit, too, is that if you in the midst of it, you do have to be thinking like, okay, how close I'm out of motor strip, I'll close am I to speech. You know, I don't want to just all of a sudden go wander in to speech. It's one thing to be in a more silent part of the brain, but if you render somebody mute, that's that's something forever. Or if you render somebody weak when you didn't have to.
Jay Wellons: [00:21:27] That doesn't get better. That's that's a tough pill to swallow. And so on the one hand, you have to be constantly thinking about where you are and reevaluate what your tumor resection margin is or where am I again? Let's get let's make sure we're in the right place. But you also can't let yourself be paralyzed in the moment. With the ramifications of "if they're weak, they can't go back and hold their child again or they can go back and play baseball again. Or baseball makes me think of my son. And what would I do if my son had a tumor?" That that you have to really hit this clutch and just disengage in the middle of doing it. And then you can feel as people say, you can feel all the feels later because it's impossible to take out a tumor on a six year old and go to six year old girl and go home to your six year old daughter and not feel a commonality with that family. Right. So it's like this duality. I talk about duality a lot, maybe because "I speaketh with forketh tongueth," but I just talk about duality a lot because you have to both recognize the ramifications of what you do, but don't let it get you paralyzed in the moment. If that makes sense.
Tyler Johnson: [00:22:39] So can you. And I recognize this is asking you to be vulnerable, but. If there's one that you would feel comfortable. Can you tell us about a time when it seemed like things were going to plan and everything was headed in the right direction and then the outcome was something that was that just left you really, really sad or, you know, I would imagine there would even be times as a pediatric neurosurgeon when outcomes leave you devastated because of of what happens.
Jay Wellons: [00:23:10] So definitely I can think of. Several examples of that. I think one is I talk a little bit about Hannah. She's a teenager that at the time came in kind of when all the world was young, everything in her favor and athletic and intelligent, and thinking about college and thinking about getting a car soon passed her driver's test. And all of a sudden she kind of gets this tightness in her left arm and a little bit of a tremor. She kind of hides her arm under a sweater because you want to show her friends. And then it becomes really obvious to her family and from one specialist to the next. And finally, a really astute neurologist ordered an MRI scan that showed a tumor in her basal ganglia and to get all tied to layer. But it was a cystic tumor with a mural nodule. And that that looks in general, that is something that looks like something called a GPA, a juvenile polycystic astrocytoma, which is in general a grade one tumor, which doesn't usually require chemotherapy, radiation, and in our full resection gives you a 99.5% cure. And so the issue is, of course, that it's it's in her basal ganglia and it's near some of the vessels that go back to give blood supply to the part of the brain that causes movement on the opposite side. Well, to make a long story short, we get into the operation and there's the tumor. And you remember those kind of beaded curtains from the 1960s that hang over door frames and think about the perforating vessels that come off some of the blood vessels that are under the surface of the brain.
Jay Wellons: [00:24:53] Those perforating vessels can look like curtains. And so all of the beads came down around the tumor except for one little tiny one that went directly in it. All the ones that came around it were beefy and big and look like they would give good supply. And ultimately, at the end of the day, I made a decision to take the vessel that went into the tumor because there was vessel that came out on the other side. But we would have left tumor that wouldn't have given her a cure. I went out to talk to the family and we were done and she was waking up and looked down and got that terrible text that she's not waking up in the way that we want her to. And so I remember excusing myself from the family and going back in the O.R. and she had that little tiny, teeny, tiny perfector that the tumor had grown around. It turns out it was really important for movement on the opposite side and even had an impact on her on her speech, too. So she'd had a stroke, very pinpoint stroke. We got an emergency MRI scan and there was. So Hannah's life was forever changed in that one moment, that one decision that her and her parents life or forever changed. And again, like Jensen in the book, like Ali in the book, like a lot of other patients that I wrote about, you know, I watched her basically kind of claw her way back to really substantial recovery.
Jay Wellons: [00:26:15] She still has some weakness on on that arm, but she's remarkably better over time. But it's taken her time and she will always have a little bit of speech issue, a little bit of vision issue, a little bit of weakness issue, and that that's taken her a year and a half, two years to recover from. So that's one example. And that's of somebody who has come back to live a life and Instagram out her trips with her family to the beach. And that's one I can take solace in. But there are others that didn't turn out that way. There's I read a little bit about the emergency separation of those conjoined premature twins and how challenging that was when all was going well. And then all of a sudden it just was not. And both those children ended up not making it with a very, very challenging twin situation. So certainly those things exist and you do have to find a way to internalize it to make sure that you live it, understand it. Certainly get the lessons from it, not to minimize it down at that point and then pack it with you. But but don't let it just be in your full frontal vision that paralyzes you as you move on to the next. You have to you have to move on and recognize that there are people that are there that need your help and that you can help.
Tyler Johnson: [00:27:51] I recognize again that this is very vulnerable, but I think we found that those are the things that are the most most helpful. Clearly, being a pediatric neurosurgeon, as you already explained earlier, I mean, can you imagine I mean, this is brain surgery, right? Brain surgery and rocket science. Those are the two things that this is not. But this is right. This is brain surgery and it's pediatric brain surgery. Right. So you take these things out and many of your patients, as you talked about earlier, go on to send you their wedding invitations. Right. It's I mean, they owe you their life to, in some sense, you and your team. But at the same time, as we're talking about now, then there are these other times when even though you do, even with all of your training and skill and experience and you do things all the best way that you know how, things still don't go to plan. And so I guess the thing that I'm wondering is, I mean, I remember when I was very first an attending and this was as an internist who, yes, was making important decisions, but it's just not in at least with the same immediacy that that happens with with surgery or neurosurgery. But even so, I would wake up at 3:00 in the morning and think I should have ordered that test earlier or I should have known about this diagnosis the day before, or why didn't I give that medicine when I gave this medicine? Or if I had done this other thing, then the person would still be alive or whatever. So I guess I'm just wondering when you have those nights where you wake up at three in the morning and you know that person who you wish you would have saved and thought you could have saved but didn't, you know, comes to your mind. What do you do? Where do you go? Like, how how do you cope with what has to be a substantial burden?
Jay Wellons: [00:29:26] Well, I mean, I've definitely had the 3 a.m. wake ups and ah, the challenges to go to sleep or even dreamed about an operation. Reliving it for me. I rely on previous mentors that have helped me. Learn how to move through challenging times. I rely on this kind of green field that I keep just outside my vision, which is a place where I can kind of put the memories and thoughts around these children that didn't didn't make it. And I can honor them by having a place that's carried with me, but where it's not in my fore vision all the time. Right and right in front of me all the time. And then, you know, I am fortunate enough to always say that I'm homozygous for the God gene. And what I mean by that, I guess, is that I'm fortunate enough to be somebody who does rely on my own personal theological Construct for strength. That's been an important part of my life from the very beginning, even to now. I don't mean to claim that I'm. More pious than the next person. That's not it just has to do more with having a sense of higher purpose is important to me and perspective is important to me. And also just I don't think there are some things that we can answer on this earth right now. And I think that it's just not something that we're capable of doing. Our perceptions aren't such, but maybe one day and. Some other environment and some other plane of existence. Maybe we can understand why bad things happen and suffering is in the world.
Henry Bair: [00:31:12] So Dr. Wellons, a lot of our guests, particularly guests who deal with seriously ill patients, they talk about how the relationship they are able to form with their patients are often something that they come back to over and over again, and that helps them move forward even when things get difficult. Can you tell us what those relationships look like in the context of your particular patients? I know that you often take care of very, very young patients, and given the nature of their conditions, they might not be able to interact much even in those cases. How do you form those connections?
Jay Wellons: [00:31:53] Well, I mean, oftentimes when the kids are young, you're really forming the connection with the parents. And one of the things that we do know about pediatric neurosurgery is that it's less like aa1 off encounter. You know, certainly there are consults that we do on non operative skull fractures who don't need to worry about coming to see us in clinic again because it's going to a fine. And certainly there are epidural hematomas that you take out in kids where you bring it back from over the edge and you see them in follow up to get their stitches out. You see them six months later, maybe you see them a year later, and then they're off to the races. But there's a lot in our field where you continue to follow, at least until they get to the age of 18 or so, just because of it being a particular pediatric type issue, that can still change with growth. So for me, I think you do develop a relationship with many patients. Kind of once they hit that age of where they can begin to have a relationship with you or you're having a relationship with their families. There's a story where I talk about Ali and her parents, which when you first meet them as a neurosurgeon, that's one of the hardest things they've ever had to do, is meet a brain surgeon about their child who's had a stroke or has a tumor or some terrible issue.
Jay Wellons: [00:33:14] It's oftentimes the worst day of their life when you're meeting folks. So I just am fortunate enough to have the perspective over the years to know that that hard conversation over time changes to this pretty substantial sense of community. And one of the things that was really interesting to me was one of the publicist system marketers on the Penguin Random House team had this idea about doing this thing called Faces of New York. They called it Faces of All the movies. And it was taking many of the children that I wrote about and doing a follow up with them that came out on Instagram. And she said, Do you think the families would be for this? And I was like, Well, you know, so many of them were so engaged and happy to be part of the book. All of them that maybe so. So basically almost 100% said yes. And they sent some pictures and they had questions that they answered. And a lot of the questions were, what did you learn about yourself or what do you want people to know about you? Or What was the mantra that you said? And this was to the teenagers that have recovered from earlier surgery or the parents, if their children were young or if the children didn't make it for some reason.
Jay Wellons: [00:34:24] And really, 90% of the answers had something to do with the faith about what their their own faith had deepened or their faith in their family had deepened. And so I just found that very interesting. And also as you develop relationships with people. I mean, I can just think back to some of these kids that I've written about where I think their parents are amazing and they've taught me a ton. But also I don't want to sugarcoat it. I mean, there are parents who never want to see me again, and there are some people who write terrible things about me on the Internet, on the social media accounts because of this, things that we may or may not have any control over, and that that part is hard, but that's also human and that's also our fallen state, and that's also where we exist at on this really intense edge of trying to pull many patients back from over the edge.
Tyler Johnson: [00:35:27] Now, one thing that you mentioned just now with your patients and that you mentioned previously with yourself, you know, we live generally in an increasingly secular age. And most doctors, at least in my experience, are very hesitant to speak of matters of faith at all. And it would seem like if anybody in the world would have good reason. To not have very much faith in a divine power or to not feel free to speak about those kinds of things. It would, for heaven's sake, be a person who has to confront tumors that are growing in kids brains. Right? I mean, kids should be getting their broken arm fixed that they broke on the playground. Right. Not getting a tumor taken out of their cerebellum or whatever. So, I mean, I guess I'm just struck if if that's one of the things that has formed a chief sort of emotional anchor for you over the years. How does that confidence persist in the face of what would seem to be such manifestly contrary evidence that you're literally dealing with every day of your life?
Jay Wellons: [00:36:34] Yeah, well, I think I think without making some personal statement of over importance, you know, I think being part of the miracle, being part of the process, being able to use what you've been taught to help a child, to help them recover, to help them get better. I mean, honestly, that's a very powerful thing. And it actually, to me, it kind of seals more. My own theological thoughts about what we can do to help our fellow man. I mean, I wrote about this a little bit in an essay I put out in Garden & Gun. It's a Southern kind of magazine that I wrote about being camp doctor two days after I took a tumor out of this little girl's brainstem. Out of her brainstem. And about how, at the end of the day, it really is about connections and about how we're called to help people. It doesn't matter if you're taking a tick off of them or if you're taking a brain tumor out at the end of the day, I really believe that that the way that we're going to move this society forward is by remembering that we are called to be kind and good to one another and to remember that we are more alike than we are different. And those are the ways, I think, that we're going to heal and be able to move our society forward, as opposed to focusing on what makes us different. But to me, I think you're 100% right. There's an awful things that we see. But then there are times where you really can't intervene and taking a tumor out of a child's posterior fossa and getting a clean scan and having them wake up.
Jay Wellons: [00:38:15] And if it's an benign tumor, that's it. You know, mean you've given them a cure and you've made it where they can go back to baseball or if it's a medulloblastoma or an appendectomy or a more malignant tumor. You've done what you can do. But by helping them from a surgical standpoint as much as possible, and then you really rely on your pediatric neuro oncology colleagues and the systems that you've set up via a tumor board or whatever to really kind of maximize their care. I mean, you know, we had a tumor board every week where we sit and look at scans. I'm sure you guys do, too, where you look at scans and you really want your surgeons to be able to say, is that little dot there, is that radiation necrosis, is that actually recurrent tumor? And if it is, then let's go back and be a part of the healing process again. I think for me, that's what it is. But what? It's tough. Is when you see somebody who is innocent, like a child, be injured or have some type of brainstem glioma or a GBM, where what you do can only have a moderate amount of impact in the long term. That part is hard, and that's where I just have to recede into. We are part of a fallen world and our job and our role here as pediatric neurosurgeons is just to help as many people as we can.
Jay Wellons: [00:39:39] And sometimes that's in doing operations and sometimes that's in helping the family make at the end of the day, decisions that allow them in retrospect, down the line if their child does die, to be able to look back and said, we did everything we could, we made all the right decisions that we can make and not an awful time. And we are past it. And I think that that's that's really important. And then the last thing I'll say is that my chairman and good friend, a guy by the name of Reed Thompson, he talks about this concept of there being peace with a plan. And I talk a little bit about this in the book, too. So when you've got all this chaos, you know your kid's sick. Somebody said something on a scan. What are we going to do? What's I don't know what's going on. There's this real anxiety. And I think you can you can imagine it because I'm sure it's similar conversations that you have. But when you then come in and say, this is what this looks like to me and this is what the next step is and this is what the plan is. After that, it really helps order this chaos and to provide this piece with a plan. It's just a it's a very strong thing, I think, to be able for people to do in the middle of their anxiety and and suffering and grief and hardship.
Henry Bair: [00:40:52] Well, thank you very much for that, Dr. Wellons. With the last few minutes of our time here, I would love to explore some advice you might have for clinicians and for medical trainees, particularly. We've spent the last hour here talking about some extremely challenging medical clinical situations, perhaps the most challenging, you know, clinical situations in the hospital. So what advice do you have for clinicians and trainees about staying connected to what matters most in those situations? And perhaps what can you tell us about maintaining hope in the face of seemingly insurmountable challenges?
Jay Wellons: [00:41:34] That right there might be worth another book. I mean, that's a big topic. But I will tell you that I think it's important to be a part of a community, whether that community or your partners or that community is your family or your neighborhood or your faith construct, you know, whatever that community is. To be able to see a broader picture is important because I know personally for me, when I get bound up in just seeing what's right in front of me, that's when I begin to have a more anxiety, and that's when I begin to feel like the work can never be done. So I think having a community outside your immediate work is really important for perspective. I think perspective is important. The other thing I think that's important for perspective is the concept of reflection. And what I mean by that is pushing ahead for 17 or 18 years and then all of a sudden being forced to reflect, you know, being forced still. Like there's only so much Netflix you can watch, right? I mean, for me, it was just about like.
Jay Wellons: [00:42:40] Really having the opportunity to reflect. And so I think if there's a way that I could tell younger people now to just engineer some reflection into their into their own practice, whether that's monthly, whether that's yearly, whether that's at year five, I'm going to spend this substantial amount of time reflecting and then have the ability to look back and see the things that you've done, the broad picture. It's human nature to. Remember the hard conversations you've had with somebody and not the easy ones are to remember the cases that that you wish something else could have happened, as opposed to the ones where you've taken out a tumor and the child's got a negative scan and they they're doing great neurologically and they're back in school and those those tend to go away. And so I think reflection is incredibly important. And whether that's in the confines of a narrative medicine group or whether that's just you just have a chance to sit back and think about what you've done and how you've been able to help people. I think that perspective is really important.
Henry Bair: [00:43:50] Well, with that, we want to thank you again for your time and your generosity in sharing your stories and your insights. It's been a true pleasure.
Jay Wellons: [00:43:58] Well, thank you both. I really, really appreciate the opportunity to do it. I commend you both on what you're doing with your podcast and. Getting the word out to communicate with other people in the medical community about things like this and and how to process it and how to be able to move forward. So I'm grateful to you all for what you do, and thank you for having me on.
Henry Bair: [00:44:22] Thank you for joining our conversation on this week's episode of The Doctor's Art. You can find program notes and transcripts of all episodes at the doctors art. If you enjoyed the episode, please subscribe rate and review our show available for free on Spotify, Apple Podcasts or wherever you get your podcasts.
Tyler Johnson: [00:44:41] We also encourage you to share the podcast with any friends or colleagues who you think might enjoy the program. And if you know of a doctor patient or anyone working in health care who would love to explore meaning in medicine with us on the show, feel free to leave a suggestion in the comments.
Henry Bair: [00:44:55] I'm Henry Bair.
Tyler Johnson: [00:44:56] And I'm Tyler Johnson. We hope you can join us next time. Until then, be well.