Allie had a stroke when she was 2 years old. Her doctor tells the story of her resilience and her family’s love.
“She’s very sick, and I am concerned that she may not make it through this,” I said to her parents. “But she may,” her mother said, looking up at me.July 21, 2022
Allie at home. It’s been seven years since her surgery, and Jay Wellons, her neurosurgeon, calls her “phenomenally resilient.”
Editor’s note: This is an excerpt from “All That Moves Us” by Jay Wellons, MD, Chief of Pediatric Neurosurgery at Monroe Carell Jr. Children’s Hospital at Vanderbilt. It is used with permission of Penguin Random House, the book’s publisher. An interview with Wellons follows his story.
Most conversations that pediatric neurosurgeons have with parents when meeting them for the first time are usually the hardest things that parents have ever had to hear about their children. But he’s always been healthy he’s never been sick a day of her life how is this happening? Nowhere is that as true as in the ED or in the pediatric intensive care unit, the PICU. Often parents become emotional when we start to introduce ourselves as pediatric neurosurgeons, and it can be hard to stay on point when you know that most everything coming out of your mouth is extremely difficult for them to hear. Not hard in a “your most recent work peer evaluations are not ideal” kind of way, but hard in a “please someone wake me up from this terrible dream” kind of way.
There’s a pause that comes when I have to confirm to parents what they know, or suspect: that their child is close to death. In the seconds before the words come, I am acutely aware that their lives will be forever changed.
I remember meeting two-year-old Allie in the PICU several years ago. She was lying flat and immobile in the ICU bed, the ventilator hissing its regulated, even breaths for her. Apparently, she had been completely healthy until her mom had noticed that she was weak in the left leg while playing in the backyard, just the slightest amount. Soon, she was unable to move the leg at all. Quickly they were off to the ER, then for emergency brain imaging and the unstoppable descent into their family’s new nightmare.
Now nurses moved around her bed quickly, adjusting drips and silencing the occasional alarming monitor. Allie was comatose, unresponsive to all but the deepest stimulation. Her parents stood stunned just off to the side at the head of the bed, holding her hand and staring at their daughter, who was as close to death as they had ever seen anyone. Moments before meeting them, I had looked at her brain MRI with my resident and nurse practitioner partner. I remember telling them both before we walked in the room that it was not the image of a child who would do well, perhaps a 5 percent chance of survival at best. I could not help but begin to think of the difficult conversation to come.
Her brain MRI showed a large bleed in her brainstem, the pons specifically. The normal brain was compressed from the inside out, the pontine brain tissue now only a thin rim displaced by the blood clot, most likely from a hemorrhagic cavernous malformation. It was gigantic considering the small space. At that point in my career, I had never seen a hemorrhage quite that large in that part of the brain with the patient still alive. The brainstem, as detailed earlier, is a small space with a great deal going on. Not ideal to have a large blood clot in the center of it all.
Allie’s parents looked exhausted. I could imagine how little sleep they must have been going on. “It’s a stroke? She’s only two. Are you sure?” her dad asked.
The parents were called directly by their pediatrician while Allie was still in the scanner to relay to them what the radiologist was seeing on the initial images. When the MRI was finally completed, she was taken directly back up to the PICU, and our team met them there, learned her recent history, examined her, and called me.
“Hello, I’m Dr. Wellons, one of the pediatric neurosurgeons,” I said as I walked up to the bedside to examine her. “I’m so sorry to be telling you this. Your daughter is very sick. I know that you know that. She’s had some bleeding inside her brain, a stroke of sorts, and it’s in a very important place.”
“Can you take it out?” the dad said. He looked exhausted. They both did. I could imagine how little sleep they must have been going on. “It’s a stroke? She’s only two. Are you sure?” His questions were starting to come rapid-fire.
There’s a pause that comes when I have to confirm to parents what they know, or suspect: that their child is close to death. In the seconds before the words come, I am acutely aware that their lives will be forever changed. There is no effective way to mitigate the pain and deliver what must be said. I remind myself that they are this child’s parents. They have loved her and cared for her, and they need to know what is happening. It does not matter that I don’t want to tell them. It does not matter that I know deeply in my own chest that I could not bear the news if someone was telling it to me. They need to understand. It is my job.
“Well,” I replied. “Some strokes are from not enough blood flow, and some are from too much.”
“Is she going to live?” her mom asked.
“She’s very sick, and I am concerned that she may not make it through this,” I said and then paused again.
“But she may,” the mother said, looking up at me, “make it through this . . .” Her last words trailed off.
“She could,” I said. “There is always a chance.”
And I left it at that.
“So it’s a stroke now? I thought it was a brain tumor,” the father said, rubbing his temples with his fingers. “Somebody else said it was a brain tumor.”
“Well, I don’t think it’s that,” I said softly. “It looks to me like a blood vessel malformation.” It’s so hard to know how to describe this to people. The word “malformation” sounds so clinical and distant, like the “abnormality on the X-ray” or “your family member just expired.”
“What do you mean, ‘malformation’?”
“It’s a collection of little abnormal”—damn that word—“blood pockets, like veins, but they can bleed and cause major problems in the brain,” I said. “Problems like what your daughter’s going through.”
“So it’s not cancer?”
“No, I don’t think it’s cancer.” As I said this, they pulled each other closer, side by side.
“Thank you, Doctor,” they said.
“But I’ve not done anything. In fact, I really can’t do anything now because she’s too sick to take to the operating room in her current state and it’s deep in the brain and we have to see if she will survive in order to . . .” It was my turn to be rapid-fire. I was rambling the news out, as if it didn’t take the first time I said it to them and I needed to make it very clear.
The mom cut in: “Our Allie’s a fighter, Doctor. She’s going to get better.” Then she turned back toward her daughter, her discussion with me clearly done. Her husband nodded. It was time for me to go.
Indeed, over the next few months and against all odds, Allie did stabilize. Gradually, she began to improve. Weeks of inpatient rehab followed by outpatient rehab. All the while, the blood around the malformation resorbed. It shrank slightly. At that point, perhaps she would never need surgery. Even I began to believe it.
Then, suddenly, another bleed. This time not as severe as the last, but the lesion had expanded again. She wasn’t as neurologically affected as the last time, but this was likely a sign of things to come. Another bleed like the initial one would be tough for her to survive. Neither radiation nor chemotherapy would be effective. Radiation has not shown to be effective in treating these types of vascular lesions, and chemotherapy is reserved for brain tumors. It was to be surgery or to let the natural history play out, meaning she lives as she is and her parents know at any time the bottom could drop out.
It became time for a go/no-go decision regarding the operating room. Cavernous malformations that are down deep in the brain-stem like this are challenging to remove. Particularly those in the middle of the pons. To get to the lesion, we would have to enter from the back of the brain. The only way to do that is to traverse the floor of the fourth ventricle, the equivalent of the neurosurgical no-man’s-land, a minefield of important brainstem nuclei and tracts. Some of these cavernous malformations grow closer to the sides or the front of the brainstem, and approaches from those directions involve drilling away part of the base of the skull in order to get there. I’ve done them before; often the drilling takes longer than the resection, but that would be of no help here. The lesion came up just underneath the floor; it was where the rim was thinnest. The question came to me again: Should we let her bleed a third time? Or move forward with resection, knowing that there would be a cost to getting it out. I did not think she could survive another bleed. I believed it was time to take it out. The parents were in agreement. Plans were made to move ahead.
Doubt creeps in. Was this the right decision? I veer off into that place we are supposed to avoid as pediatric neurosurgeons. Not introspection, that place is critical. But the place of self-doubt that can paralyze you in the middle of a challenging operation.
The floor of the fourth ventricle looks, oddly enough, like a kite, a standard diamond-shaped kid’s kite. The upper reaches are smaller, hidden up under the superior cerebellar peduncles, structures that look like the angled walls in the top floor of a house but that carry information running to and from the cerebellum and are responsible for coordination. Above all of that is the cerebellum itself, responsible for all coordination in the body. The lower portion of the floor is divided from the top by a series of long neurons running along the short axis, from east to west, called the stria medullaris. The midline spar of the kite is the median sulcus and divides one side from the other. But the lower portion holds several key nuclei that are responsible for swallowing, breathing, nausea, tongue movement, and alertness level. Right above the stria is a small bump called the facial colliculus. This is where the facial nerve coming from deeper in the pons runs up and around the sixth nerve nucleus, responsible for lateral eye movement. It’s a key landmark in surgery, and damage directly to that area takes out facial movement on that side of the face as well as lateral eye movement. In addition, this particular minefield in Allie is squashed out to the sides from the internal hemorrhage. The approach to lesions in this area is in a small zone one centimeter above the facial colliculus and five millimeters over toward the peduncle wall. Taking out something like this is like taking a large walnut out through a small keyhole. Except the walnut is full of blood and everything around it is important for Allie to be able to interact with the world around her.
In the OR, she lay prone on the operating table, her head clamped in a vise of sorts that keeps the head still. (It’s put on after the patient is fully anesthetized.) The back of her head was prepped and draped and the skin opened straight down the midline. We divide the upper neck muscles and temporarily remove a sizable piece of skull to give us the angle that we need to get the cavernous malformation out through the planned opening. Once the dura is open and the cerebellar hemispheres are gently retracted out to either side, we bring the operating microscope in. The kite is in full view as the “real part” of the operation begins despite it being ninety minutes since we cut skin. In order for us to tell where to enter the brainstem—meaning, cut into it with a microscopic sharp knife—we stimulate the floor of the fourth ventricle with a slight electrical current until the tiny needles we have in the facial muscles detect a twitch, telling us where the facial colliculus and tract are as they move through the pons to exit laterally into the temporal bone.
Then, using the tiny knife, we are through the floor, and immediately dark blue blood begins to pour out, the liquefied blood clot extruding through the hole. Our monitoring holds steady. Then we begin the dissection within the venous pockets, carefully removing them one by one. As we do this, the heart rate begins to swing wildly. We stop to let things settle, then start again. Over and over. Stopping. Starting again. We keep an important engorged internal vein intact that would cause her to stroke even worse if we damaged it. Before we know it, five hours have passed under the microscope and we are done.
I look down to see a cleft in the floor of the fourth ventricle that is clearly larger than a keyhole, unavoidable based on the lesion size. Is it possible to have done this without further cost? I hope to myself. Doubt creeps in. Was this the right decision? I veer off into that place we are supposed to avoid as pediatric neurosurgeons. Not introspection, that place is critical. But the place of self-doubt that can paralyze you in the middle of a challenging operation. An operation that needs to be done to stop the bleeding, to take out the tumor, or to bring that child back from over the edge. I pull it back together and work a bit longer under the microscope. Then we are done and we start to close up and Allie begins the long road of recovery.
After more than seven years from the events that have forever changed her life, Allie continues to recover. She’s back in school with her friends but debilitated. Her words are stilted and slow to come at times. Her movement is choppy and she uses an upright walker to get herself around. But she has come a long way from being comatose and on a ventilator. In the time between then and now, she navigated another, similar surgery for a small recurrence of the cavernous malformation. This time behind that normal vein we worked so hard to keep intact. It again took her months to recover, but she did, once again walking into my clinic and sitting herself down in the examination chair. After that, a small plate used to secure the bone flap back to her skull wore through her skin. We removed that in a thirty-minute procedure, and she went home the same day. Allie was amazed that could happen, even asking me at the follow-up clinic visit why I didn’t let her go home the same day after the other operations. Several months later, she began to slowly decline, her walking a little less vigorous, conversations less spontaneous. A follow-up MRI showed that she had developed hydrocephalus. We performed a procedure called an endoscopic third ventriculostomy, which bypasses the CSF blockage internally in lieu of a shunt. Then she was back on track to recovery again. Recently, she slowed down again, and her hydrocephalus had returned. We repeated the procedure, and again she’s right back to it.
Allie had lived through challenges that many of us would never have to navigate our entire lives. Each time, she was back to the stand-up walker, back to speech therapy, back to school.
I mentioned to her mother, Carolyn, at a recent clinic visit how phenomenally resilient I thought their daughter was. How each time she bounced back from surgery, I was amazed at her strength. During the time in which I was facing and recovering from the muscle tumor in my upper leg and pelvis, I found myself drawing from memories of her and her resilience, as well as others I had taken care of along the way I was floored by my own existential threat of a tumor, and this little girl faced a similar fate head-on. Allie had lived through challenges that many of us would never have to navigate our entire lives. Each time, she was back to the stand-up walker, back to speech therapy, back to school.
“What is it about her that enables her to do this?” I asked Carolyn. What is it like to see your nine-year-old daughter go through so much yet somehow push through it?
“This is all she’s ever known,” Carolyn answered. “We knew her before all of this and she was early to walk, early to babble, frustrated to not be understood clearly even at that age. She was always pushing. But her bleed happened when she was two. Now this is her normal. It’s all she’s really ever known. Her entire life has been one recovery after another.”
I watched as Allie stood herself up, wobbling just a little. Her mom put her hand out to steady her, but Allie pushed it away.
“M-o-m,” she said slowly in a way that clearly meant do not help me.
“Dr. Wellons,” Carolyn continued, nonplussed. “Do you remember at the very beginning, that very first time we met you when you explained to us what had happened and we said that Allie was a fighter?”
“I do,” I replied. “She was comatose and hadn’t started to recover at all. In fact, some of the hardest days were yet to come for all of you. I hadn’t the foggiest idea how much of that to really convey. So, I kind of didn’t.”
“No, no you didn’t. That was obvious,” she said, laughing.
I laughed with her. Although I was only around at the most intense times, I felt as if I had walked a journey with their family. We watched as Allie was making her way to the clinic room door, then into the hall to go get a cartoon sticker from the nurses. She pushed her walker through the door frame, banging the door as she went, clearly with an intention of being somewhere else. Carolyn and I laughed together again. Then she looked up at me, her face immediately serious. All of a sudden I saw her at Allie’s bedside years ago, holding her daughter’s hand, her world having crashed down around her.
“That day you did something that I don’t think you really realize. We’ve never told you.”
She paused as she watched her once near-death daughter clatter down the hall to collect her sticker. I turned to face Carolyn. I had come to admire her and her family a great deal over the years. I braced myself slightly, not knowing what her next words would be.
“You may have thought that you were giving us the worst news of our lives. But we were living that when you walked in that night. What you did was give us hope. Hope that we’ve never, ever let go.”
A conversation with Jay Wellons
By Christina Echegaray
In 2017, Jay Wellons, MD, MSPH, chief of the Division of Pediatric Neurosurgery at Monroe Carell Jr. Children’s Hospital at Vanderbilt and Cal Turner Professor of Pediatric Neurosurgery, found himself on the flip side of a conversation he was all too familiar with having with families. But this time, instead of being the doctor who delivered the news, he was the patient who listened.
“You have a tumor, and it has to come out.”
Wellons had a tumor in the muscle of the upper leg and pelvis. Thankfully, it ended up benign, but it took him several weeks to recover and regain his ability to walk without assistance. Always keenly aware of how his personal life intertwined and intersected with his career as a neurosurgeon, that fact was even truer now. During his recovery, and spurred on by his sister and his spouse, he began to put his reflections on paper.
From that came two published pieces in the New York Times Sunday Review. Then before he knew it, he had an agent/editor who asked him to channel his favorite author, James Joyce, and tell the story of why he became a pediatric neurosurgeon. So, he sat down at the kitchen table one Saturday and carried out an exercise in uninterrupted thought, where sans punctuation or grammar or structure, his words flowed on the computer in a stream of consciousness about just that and about patients who moved him and how the two connected.
Few people probably know that Wellons studied as an English major in college, devouring the works of James Joyce and William Shakespeare, and was inspired by them and the numerous Southern writers he was exposed to at the University of Mississippi as he penned his own works. But he was also always drawn to medicine classes to better understand the human condition and also to help people at a fundamental level. He also had the strong influence of his father who had wanted to be a doctor but never the resources to get there.
Through this writing exercise, he married together his little-known start as an English major and writer in college, his personal life experiences, including his beloved relationship with his father, and the undeniable interconnectedness with his career as a pediatric neurosurgeon.
In this interview, Wellons shares some of his motivations, his inspirations and his process for writing his recently published book All That Moves Us.
Q: When did you decide to write a book?
Well, I had that tumor and it was thought to be malignant, until it wasn’t. It was benign – and I’m so grateful for that, but I had to have surgery to have it and the surrounding muscle taken out. I was on basically bedrest for literally like two and a half months afterwards. So right before that, I was living the busy academic life. I was busy with practice and several leadership roles, including program director and facilitating clinical research efforts…and all of a sudden, I went from Warp 9 to being still. And oh, by the way, I had just gone through this existential threat which causes you to think about things a good bit. So, it was my sister who said, ‘You know Jay you should start writing down those stories that you’ve been telling us about over the years.’ And so, that’s what I did.
Q: How did you pick the stories you would write?
I had probably had eight or so stories and that I had written just kind of for myself, and I said maybe one day you know… but I mean that’s not that many over the years. When I was down for bed rest, what I decided to do was to start categorizing them from different times in my life, medical school, residency, early career, even growing up. I just started writing down like one word, one sentence that triggered a memory like “ax man” or “catfish guy,” or, you know, “the lady with the splenic artery aneurysm” — that kind of stuff that I remember from each kind of epoch of my life. And then I just started writing it.
Then all of a sudden it seemed like, it went one day from those few essays, thinking I would do it as a hobby, to realizing that it could have a narrative, and that narrative could have a little bit about me, and some about my relationship with my dad who died early on but was a big influence in my life. But I really tried to focus in on the children and the patients and their stories and what they went through. And then over time, and with the help of some early trusted readers, it was able to be woven together into one book. That was a meaningful process for sure.
Q: Why it was important for you to intersect your personal life with your professional world?
I just think it’s impossible to draw a line between the two. To think we don’t bring our work home with us to our own families is crazy. How can you do some big resection on a 5-year-old with a brain tumor and come home and not look at your own 5-year-old and not just feel as though you are connected to those parents.
And really, these are stories of kids who went through these really hard things…but they showed so much resilience and grace. I’m not trying to whitewash it. Suffering and grief are hard, and none of us are immune from it, but to watch the transformational process over and over, well it’s hard not to find myself in the midst of all that, drawing back on those stories as sources of strength for me.
Q: Do you have a favorite part of the book?
Obviously, I like telling the patient stories. I really like talking about my dad too. It feels really good to honor him because he was such an important person in my life. It’s important to honor people that have had such an impact. There’s a chapter in there about the morning that my father died and, and I tell a little bit about what the family lore was with dad, and kind of some of the things now that I think had a lifelong impact on me and maybe give me some insight on what motivates me in my work.
Q: What do you think your dad would say about you writing a book?
That’s a good question. I think he would be proud. My dad…I called him the ultimate enabler, and I mean that in a good sense. He was really good at helping people grow into their capacity, not necessarily telling them what to do or telling them where to go, but helping them see where they wanted to go, and then doing things to help them achieve it. I have to say that this is something that I really enjoy doing, particularly with our residents and students. Just like for many of us in academic surgery and education, it just gives me a great sense of purpose. And I think that the fact that he could look at what his son is and see that I’ve had some degree of effectiveness in something that he valued so much, I think that he would like that very much.
Q: You talk about James Joyce as your favorite author, and you incorporate his writing into the epigraph. Why?
He has such a gift with thoughts that just move so seamlessly from one sentence to the next or one paragraph to the next. Many think of his most famous work, Ulysses, which is an exercise in stream of consciousness writing, but my favorite works are some of the short stories in Dubliners. Just phenomenal snapshots of life in Dublin and Ireland of the time. The final sentences of both “Araby” and “The Dead” are two of my favorite most famous quotes in all of literature. Gosh, just amazing stuff.