The Fare Forward Interview with Dr. Jay Wellons
Jay Wellons, MD, MSPH, is a pediatric neurosurgeon and professor in the departments of neurological surgery, pediatrics, plastic surgery, radiology, and radiological sciences at the Monroe Carell Jr. Children’s Hospital at Vanderbilt and the Vanderbilt University Medical Center. He holds the Cal Turner Chair, is the Chief of the Division of Pediatric Neurosurgery, and is the medical director for the Surgical Outcomes Center for Kids (SOCKs), which he co-founded. Fare Forward spoke with Dr. Wellons about grief, faith, and his memoir All That Moves Us: A Pediatric Neurosurgeon, His Young Patients, and Their Stories of Grace and Resilience.
Interview Conducted by Whitney Rio-Ross
Fare Forward: You are in a field that encompasses both the joy of healing and the grief of loss. What have you observed about joy and grief in your patients and their families?
Dr. Wellons: Well, you know, most of the time when parents are meeting a pediatric neurosurgeon about their own child, it’s one of the most difficult experiences they’ve had. And that’s because it’s usually about something pretty serious about their child. And having to talk to families about blood vessel malformation, rupture in the brain, or a brain tumor or some injury that’s occurred, or some issue that’s causing their child’s life or limb function to be at risk—that’s a difficult conversation to have. You know, there’s a lot for this family and this child to go through, but a lot of times, there’s this conversation up front that occurs that’s really hard, that has suffering and grief that’s associated with it. But then as people move through the experience, it really turns to this sense of community, whether that’s an injury that the child goes through surgery for and recovers from, or it’s a brain tumor that’s a benign brain tumor that gets taken out, or if it’s a malignant brain tumor that gets taken out and they need chemotherapy. There is, most of the time, this kind of phenomenal community that arises around the child or around the family. And then folks are on the other side of it. That can be recovery from injury; it can be recovery from surgery after benign brain tumor removal. It can even be for a family, for parents, after the child has passed away.
The latter’s difficult to say, but there’s definitely a degree of gratefulness and gratitude that’s there. And, honestly, even in situations where children pass away, I think it’s important. One of our roles is to help guide people through these experiences and make sure that at the end of the day or when everything is said and done, that the family knows that they’ve made good decisions. You know what it is in the Episcopal Book of Common Prayer: right actions and wise decisions for the welfare and peace of the world. It’s that they’ve made good decisions for their children, that they’ve been well counseled. And at the end, they can reflect on the experience and say, this was hard, but we made it through. So I think it’s this intersection of joy and grief. I kind of think of it like twins that are joined that cannot be separated. Because oftentimes without one, there really isn’t the other. I’ve lost both my parents and I missed them significantly, but there’s grief there because there was joy associated with it. And then over time that joy resurrects itself when the grief is not so strong.
FF: You mentioned in your book that you are a Christian and that your faith is important to you. How does your faith affect the way you approach your job and handle the grief that comes with it for yourself?
Dr. Wellons: I grew up in a small town in south Mississippi. We were part of a mission church, a small Episcopal church with anywhere between fifteen and twenty people that belonged to it. You know, there were a lot of other denominations in our small town that were much larger churches, larger youth groups. When we had Sunday School, it was myself as an eleven-year-old with the adults. And then we would just walk from the one room into the sanctuary and have church. And so I learned the term eschatology and the way to look at some of the gospels in a different way, just because that was the environment in which I was raised. So I’m a cradle Episcopalian. That’s been a really important part of my faith. I like that flavor of Christianity. I think it tends to be open-minded and always willing to reassess and look at certain situations and kind of constantly evaluating theology and theological constructs. I like that a lot.
So, for me, I often think about the book God is My Co-Pilot. I could say God is in the observer scope. I definitely feel like in times when I’ve had anxiety about an operation or in the midst of a situation where I need to draw strength, that’s definitely where I draw strength from. You know, there’s nowhere in the Bible that says if we’re Christian that we’ll be immune to suffering, that if we live good lives we’ll be immune to suffering. I mean, I think all you gotta do is open Job and see that’s not the case. I don’t really think God’s sitting up in heaven on a throne firing lightning bolts at us saying, “Well, let’s see how he handles this.” I just don’t think that’s happening. I think that it’s because by nature we’re fallen. If you believe that the story of the garden at Eden is true, or if you believe it’s an allegory, whatever—the fact is that we’re fallen by nature, imperfect by nature. There’s a degree of existence that we can’t reach in this earthly plane. Then that helps me rationalize some of these hard things that we see in our field. You know, there’s a lot of fields like orthopedics where you take healthy children and get them back on the field. And that is really important. And it’s been important to me. But for those of us that go into pediatric neurosurgery, it’s about taking kids at their sickest. Sometimes they’ve gone over the edge, and trying to be a part of Providence’s plan is to bring them back from over the edge. And so I don’t feel like we’re miracle workers or that we’re replacing the deity. It’s more like we’re just a part of it.
You know, one of the things I’ve considered a lot is how I actually think that science has helped us understand religion better. I don’t see a conflict. I just see science helping to explain things that are wondrous. I would argue that science is there because God allowed it to happen—the wonder of birth, the wonder of IVF, the wonder of how DNA works, the wonder of how vaccinations work, the wonder of how helicopters fly. It’s great to think about hundreds of years ago when people looked up at the sky, and they saw bright lights and they felt like that was heaven shining through the firmament of the heavens. And now we know that those are planets and stars, and that just helps us understand what the wonder really is.
So I think for me, it’s been an extremely important part of my life. It’s just wrapped up in my DNA. I’ve always said I’m homozygous for the God gene. I think belief is important. It helps me take care of patients. And it doesn’t grant an all-knowing wisdom on suffering, but it certainly allows me to know that we are called to help people that are moving through it. And sometimes that’s through operating, and sometimes that’s through having a really difficult conversation.
It’s a wonderful balance of science out at the edge and also wonder.
FF: You’ve operated on fetuses while they are in the womb, so you’re trying to save them before they’ve even taken a first breath. What is that experience like?
Dr. Wellons: Well, I’ll tell you, I’ll never forget the first time I was involved with it. I’ve done it a lot since then. It’s always full of wonder. It doesn’t matter if it’s the first time or the most recent time, but you know, our role in that is only one part. There’s a huge team that’s involved with those operations, from the prenatal counseling, pre-surgical counseling, all the way till when it’s time to go to sleep. And the maternal fetal medicine team comes in and exposes the uterus and opens the uterus. And that takes special training. And then the fetal medicine and fetal surgeons, OB-GYN surgeons, they kind of rotate the fetus up into view, and we can see the back.
So I think it’s a wonderful balance of science out at the edge and also wonder. I’ll say it’s left brain and right brain; it’s both, and it’s hard not to be washed over by a sense of the divine or the sense of wonder with the capital W. That’s anywhere from a nineteen- to twenty-two-week fetus. Now, I write about in the book where we had a situation where all of a sudden, we were doing the closure and there was a placenta abruption where the placenta starts to pull away from the uterine wall, and we had no choice but to deliver the baby. And I’ll let people read that to see what happened, but it was a pretty amazing experience to see that team in action with the focus on the mother and the focus on saving the uterus and the focus on saving the fetus that turned into a baby within, you know, ten seconds. So definitely wonder. It’s definitely amazing to see, and it feels like you really are helping these women and helping these ultimate children be better in the long term.
FF: In your book, you include several essays about your father and his death from ALS, a neurologic disease with no cure. How has his death guided you and your work?
Dr. Wellons: Well, you know, I had already decided to go into neurosurgery when my dad was diagnosed. And it’s ironic that what ultimately took his life was a neurologic condition that has no surgical treatment, has no medical treatment, either, for that matter. I kind of didn’t know what to do but to bury myself in my work. I mean, there’s nothing like going to an old-school residency program in neurosurgery, back in the 1990s when there were no work hour limitations. And so we basically worked all the time. You know, they called residents “residents” because we were residents of the hospital. I mean, I rarely went home, and we were definitely sleep deprived. We saved a lot of people, and we took care of a lot of people. I think maybe I channeled into that. Like, I can’t save my dad. Maybe I can save these people.
My dad—I like to say he was kind of the ultimate enabler. Enabler is kind of a word that implies more negative things in psychology and therapy sessions, but really if you’re a positive enabler, you can take somebody and really help them be successful. And my dad did that in the business world. He did that in the international guard that he was part of for forty years plus. He retired a two-star general in the Mississippi National Guard and was awarded the Legion of Merit and the Mississippi Magnolia Cross for his work. And so he was a larger-than-life person, unbelievably supportive of me and my siblings and people around him.
So I think I probably delayed grief for a while. Just put my head back in my work and then definitely over twenty years of doing this work, I’ve seen my dad in the patients that I cared for. And I’ve seen myself in the families as they come to terms with sometimes unalterable conditions. So it’s given me some insight, some understanding, I think, of how challenging this world is to navigate through, the world of neurosurgery and the world of neurologic disease and the world of suffering and the world of grief.
But you know, losing a parent—it doesn’t matter if it’s from ALS or from a heart attack or from a car accident—you know, losing a parent is the natural order of things. Losing a child generally is not. I can remember my dad’s mom just almost having a vacant look after he passed away because no mother was supposed to lose their child. It doesn’t matter if that child is three or sixty-three, you know? So that’s given me some perspective on families, too.
Instead of me saying those things, it was me hearing those things as a patient.
FF: A few years ago, a tumor was found on your leg. So you ended up on the operating table yourself and had to spend several weeks healing. And the tumor turned out to be benign, but when you thought that it might be malignant, what were you thinking? Did the experience affect your perspective as a surgeon?
Dr. Wellons: Yeah, for sure. But you know, I’m an academic surgeon. And so what that means is that there are people that are in private practice, and the majority of what they do is operate and take care of patients. I’m in a situation in an academic center, either at UAB for ten, Duke for my training for ten years, and now here at Vanderbilt for the last ten years, where part of what I do is operate on children that come to me, but I’m chief of the division of pediatric neurosurgery. I have several amazing partners who are terrific surgeons and communicators themselves. And so I have an administrative hat that I wear. I was program director for the residency program for all the neurosurgeons here at Vanderbilt. I have roles in research and have started several research programs here for on the pediatric side and the adult side. So, you know, back in 2017, I was kind of, you know, going Mach 9.
And all of a sudden I have this situation where I’ve sat in front of multiple light boxes or computers and talked to families about: “Here’s the tumor, and you can see where it is involving the surrounding tissue, and we’re gonna need to do surgery to take it out. And this is what the risks are, and this is what the complications are. And this is how much time you’ll be in the hospital.” And instead of me saying those things, it was me hearing those things as a patient. And when you see a tumor that’s kind of deep down in the muscle of your leg and pelvis, you’re told that it could be benign but it also could be malignant and you need to get some studies and a biopsy and possibly then do surgery on it. And so for a while, it was really thought to be malignant. And then once they took it out with a wide resection of muscle around it, it was benign. And that was terrific, but I couldn’t walk very well.
I was on bedrest to help get that large wound to heal. I just kind of had gone through this existential thread of like, “Why me? Why do I have this tumor? I take out brain tumors in kids for seventeen years. Don’t works count for something?” Part of that was that realization that we’re not immune to suffering. There’s a really terrific book called The Book of Joy, which is written by a writer who interviewed the Dalai Lama and Desmond Tutu. And it talks about how suffering is part of our existence. And I just remember kind of moving through this existential crisis into a place of “Well, smart guy, you know it’s benign and it will heal, and you will learn to walk again. And it’s not in your gut or your lung or your brain or your spinal cord. It’s in the muscle and it’s out, and you just have to heal.” And so, I just began this kind of soul searching and reflection really. I mean, I can tell you, there’s only so much Netflix you can watch when you’re on bedrest for two-and-a-half months. And so I just started thinking about this. It was my sister that said, “You should start writing down some of these stories that you’ve been telling us about all these years.”
And so I just started categorizing these stories—one or two words or sentences. I’ve got little notes I’ve jotted down over the course of my career. And so once I had some of these stories, kind of in a big old outline form, then I would flesh this one out and flesh this one out. And that’s really how the writing started. And that led to a piece in The New York Times Sunday Review, which led to a second piece, which led to so many emails, which led to a book. It’s just remarkable to think that yes, I was an English major way back when I was in college. And yes, I had writer teachers that were amazing that mentored me, but then I went into medicine and I was full-on medicine until I was really forced to stop and be still. And from that stop and be still, all of this has opened its door to me. This gene within me that was dormant has had an opportunity to start expressing. So it’s amazing to me to reflect on that, to be honest. How the workings of the world and the universe—how you never know how things are supposed to work out. You just never know.
I think that we’re all a little bit more aware of our mortality than we used to be. And I don’t necessarily think that that’s a bad thing.
FF: What virtues have you learned from the experience of saving one patient and then losing another, sometimes in the same day?
Dr. Wellons: The metronomic existence of pediatric neurosurgery, where it’s from one moment it’s joy and glory and the next moment it’s grief and a great deal of sadness. Well, it’s caused me to be grateful for many things in life. I mean, I think gratitude to me is a virtue. And I don’t mean that in a selfish way. I don’t mean that in “I was spared from this suffering that I watched this child go through.” But let me just tell you, honestly, it’s impossible to take out a brain tumor in a five-year-old girl and then go home that night and have dinner with your family and your five-year-old girl comes up and gives you a hug. Right? It’s impossible to not connect with that family and feel a connection with them. And so for me, the experience of being a pediatric neurosurgeon and having kids has been really important because it allows me to have empathy. So I think that’s another virtue—having empathy with your fellow human. So I think gratitude for help, but empathy for your fellow human. And just to be able to have some compassion for what they’re going through. And we try to pass that on to our children. They’re teenagers. Now we have Jack who is seventeen, and our daughter Fair is thirteen. And we just try to say, “We believe it’s important to help others, and that’s our only request of what you guys move into in the future, is that part of what you do is in helping others.” Because I do think we are called to do that.
But I really feel like that the ability to have compassion for your fellow human being is just extraordinarily important. And I would say that because from that is this sense that we are more alike than we are different. And I think some of the splits and conflict and challenges and headbutting and frustrations and fragility that’s happening in the world right now, if we could just remind people that we’re more alike than we are different, I think that that would be a tremendous help to society. Because I think it starts with compassion.
FF: Most people don’t work in a field where they are constantly aware of mortality, but you are always seeing the suddenness of severe illness and how easily a number of common accidents can send a child to the operating room. How do you manage to go about living your life (especially as a parent) when that, to some degree, must always be on your mind?
Dr. Wellons: This piece is called “Rupture.” I’m just going to read a part of it, but it’s about a boy who had a ruptured aneurysm of the brain, and it was early in my practice and it was treated one way. And I regret that I did not treat it the way that I should have treated it back then. It was treated in a different way, and a person ultimately re-hemorrhaged and died. And it’s just me reflecting back on it. I reflect back on it and I say,
To this day, I have no idea if he would’ve returned with a rupture, had I taken him to the OR that same day as the initial angiogram and clipped the aneurysm. Even now as I write this, the very idea that the same thing would’ve happened regardless of my actions sounds like a feeble attempt to assuage my guilt. If I had performed the surgery and it had re-ruptured later, I am certain that I would’ve written an essay similar to this one. Instead of remorse that I did not act, it would be remorse because I did. People can die. Kids can die. you can do or not do, you can pray or not pray, you can work past the edge of exhaustion, but they still die. Death becomes a part of your daily rhythm. One may come inured to it, but I’ve yet to find a way to rid myself of it completely. I desperately want it gone, and yet for some odd reason, I desperately want to never let it go. Without it, there is no final line to hold. Without it to struggle against, we become less of who we think we are.
So that recognition that death and suffering and pain is around us, you’re right—it is more in our faces in this field. But I would say that society and medical society over the last two-and-a-half years, watching people die from COVID, watching bodies be stacked in freezer trucks in New York or watching people die without the ability to bring their family in around them—I think that we’re all a little bit more aware of our mortality than we used to be. And I don’t necessarily think that that’s a bad thing because sometimes when you wall that off, then you aren’t being able to recognize some of the things that cause that gratitude. How beautiful it is to walk on a hike, how a brook sounds when it bubbles under a bridge, or what it’s like to be woken up by your dog in the morning, or to have dinner with your children. I mean, these are things that oftentimes only people who have been diagnosed with a very serious illness talk about being special. And so to be reminded of that is a little bit of a blessing in the midst of what our role is, which is to help people.
One more thing I will say is that I wrote the book with, I think, hints about grace and spirituality, but not overt. And one of the things that happened organically with the book is that faith-based read of the book. I think that is a good thing. And one of the marketers at Penguin Random House (a young woman by the name of Ayelet Durant), she identified that and just made a comment about how that was powerful. And she said, “Do you think some of these kids and parents would be willing to maybe answer some other questions? And we could do a social media campaign similar to Faces of New York, but it would be Faces of All That Moves Us.” And I was like, well, we can see. And so nearly all of the families or children (if they were old enough) said yes.
So they sent pictures in, and then there were three questions: What did you learn about yourself? What would you want other people to know about you? And did you have a mantra that you repeated during all of this? And so this is now older teenage children reflecting back on their experience or parents reflecting back on the experience. And 90 percent of the answers had woven some degree of spirituality into it. Like, My faith was deepened; I saw a higher power or Providence through my family and friends; I felt my relationship with God had changed in a very positive way. It was really remarkable to see that. And, you know, while I think that Sunday morning is very important, I also think that there’s a whole lot of prayer and supplication that goes up from the cafeteria of a hospital pretty much any day of the week. And so that was a really kind of eye-opening thing for me to experience as the person who wrote the book, to see that there was a lot of spiritual reflection around it and around the experiences, too. So anyway, I just wanted to add that in.
FF: Thank you. I’ll make sure to include that.
This interview has been lightly edited for length and clarity.