Light and Shadow: A Novel of Pediatric Internship

By Chris Feudtner

Newly-minted doctor-intern Rob McNeal cares for pediatric patients ranging from newborns to young adults. Some will live minutes, others decades—the outcome isn't always obvious. Rob's task is to push for more life in their days and, sometimes, to accept fewer days.

Rob's emotional and professional journey is interwoven with the lives of his patients, their families, and the hospital staff. His growing responsibilities impose a heavy emotional toll as he struggles to complete his internship.

Nine-month-old Vergil is fed through a tube threaded into one of his veins—a procedure that keeps him alive but damages his liver, makes his skin greenish-yellow, and poses the constant risk of potentially deadly infection. Fourteen-year-old Clara has a disease in which damaged flesh becomes bone, meaning she cannot walk and can barely breathe. Ella's eighteenth birthday is coming up, but her body has rejected her new heart after a transplant.

With each person he works with, Rob begins to understand it's not about the condition, but about the patient. Every day is a new struggle, which pushes him to expand his capacity to care.

The only relief for Rob is the hospital's crisis debriefing counselor and head chaplain, who winds up helping him reflect on the lessons of his internship.

"Light and Shadow" dives deep into the daily soul-wrenching challenges of tending to the severely ill, often terminal, patients. During Rob's time as an intern, he must emerge as a capable physician with an expanded conception of what a doctor can—and should—be.

• Language: English
• Publisher: BookBaby
• Release date: Jul 30, 2021
• ISBN: 9781098388669

Chris Feudtner

Chris Feudtner is a pediatrician at The Children's Hospital of Philadelphia, where he focuses on ways to improve the quality of life for children with complex chronic conditions and for their families.

Book preview

cover.jpg

Copyright © 2021 by Chris Feudtner

Light and Shadow

All rights reserved.

No part of this publication may be reproduced or transmitted

in any form or by any means electronic or mechanical, including photocopy,

recording, or any information storage and retrieval system now known

or invented, without permission in writing from the publisher, except by a reviewer who wishes to quote brief passages in connection with a review written

for inclusion in a magazine, newspaper, or broadcast.

This is a work of fiction. Names, characters, places, and incidents either

are the products of the author’s imagination or are used fictitiously. Any resemblance

to actual events, locales, or persons is entirely coincidental.

The chapter entitled Second Time was previously published,

in slightly different form, as Second Time in Perspectives in Biology and Medicine, Volume 58, Issue 4, Autumn 2015, pages 535-545.

Published with permission by Johns Hopkins University Press.

Print ISBN: 978-1-09838-865-2

eBook ISBN: 978-1-09838-866-9

Printed in the United States of America

In remembrance

Of Beth,

who set me on this journey,

And Renée,

who believed in this destination.

Midway on our life’s journey, I found myself

In dark woods, the right road lost. To tell

About those woods is hard—so tangled and rough

And savage that thinking of it now, I feel

The old fear stirring: death is hardly more bitter.

And yet, to treat the good I found there as well

I’ll tell what I saw…

Dante Alighieri

Canto 1: 1-4

The Inferno

(Translated by Robert Pinsky)

Table of Contents

Preface

The Green Night

July

Child Life

August

Muffled Drums

September

Post Op

October

Lingering Rhythm

November

Silent Spaces

December

The Dowsing Rod

January

Stay

February

Second Time

March

Mortal Gifts

April

Intimate Intervention

May

Commencement

June

Glossary of Acronyms and Other Medical Terms

Organized by Order within Each Chapter

About the Author

Preface

Mystery and medicine. When paired together, medical mystery most often points to a patient with a perplexing array of symptoms, a case that beckons the detective, testing our knowledge and wits as we hunt for clues, seeking to solve the diagnostic puzzle. Beyond these types of medical mysteries, though, modern medical practice ideally is not at all mysterious; indeed, the past three hundred years of medical history is, in large part, a systematic struggle to render medical practice ever more clear, empirical, rational.

Yet the mystery remains. Regarding not only diseases but also how events unfold and people respond. Speaking from my two and a half decades of experiences as a pediatrician who takes care of children with complex chronic conditions and their families, things happen in the presence of grave illness that repeatedly surpass my ability to comfortably understand, leaving me to wonder.

From these experiences and wonderings, the fictional stories in this collection emerged. Each story, and the arc of a journey that they collectively trace, evoke for me the wonder and the simplicity of what happens when we try to confront, with compassion and courage, the challenges of caring for very ill infants and children, adolescents and young adults. While no patient or person in this book is anyone who has ever existed, I dedicate what follows to all the patients, families, and members of the hospital staff with whom I have worked, who have taught me more than I can recount and have shaped who I am. These stories truthfully convey for me what happens in confrontations with serious illness, even as that truth remains elusive and mysterious.

Chris Feudtner, MD PhD MPH

Leap Day, 2020

The Green Night

July

1

Midway through the first early morning of internship, and I was already lost. Gil, the soon-to-be second-year pediatric resident who had been covering my new service during the previous month, had already told me about eleven patients that I was picking up, with one left to go.

Rob, your last patient is Vergil, a nine-month-old hospitalized since birth, transferred on day of life one, status-post repair of gastroschisis, he lost much of his small intestine and part of his large bowel, now with SGS, TPN-dependent, cholestatic jaundice, and recurrent line infections, and last night at midnight he spiked to 103.4 and was cultured and started on vanco and cefepime.

I looked up from the sign-out sheet, dazed. 6:30 a.m. on day one of internship at Cordatus Children’s Hospital. I was getting a quick briefing before pre-rounding on my patients. We were sitting in the Green Team resident workroom on the east wing of the hospital’s third floor. I was overwhelmed.

Gil, I started, and then stopped, so unsure what to say. Can you tell me what SGS stands for?

Short gut syndrome. Sensing how confused I was, he gave me a nod. Don’t worry, I didn’t know all these abbreviations when I started.

He slowed down, shifting into a different gear to coach me along. No doubt, far and away the most complicated patient you’re picking up is Vergil. This little guy’s caught between a rock and a hard place: he needs the central line to get his total parenteral nutrition. Gil tapped his pen on each of the TPN initials, clear but vaguely ominous. But the poor kid keeps getting bacterial line infections that make him sick, preventing him from being able to have his enteral feedings increased enough to grow and not need the TPN anymore, and now he’s running out of veins to reinsert the central lines when he needs them replaced.

So—what’s the plan?

Gil crinkled his upper lip toward his nose and shrugged his shoulders just a bit. Aye, there’s the rub. People have very different views—his surgeon wants the line out, while his medical attendings are doing everything they can to save the line. He wagged a finger at me. Don’t get caught in the middle of that battle. Gil let that hang in the air before continuing. Adding insult to injury, the TPN’s hurting his liver, causing the jaundice.

How bad’s that?

His conjugated bilirubin’s already 5.3 and climbing higher every week. Because he’s so pale, this greenish tinge of yellow pops out, like he’s glowing, especially around his eyes. Gil twirled his pen once around in his hand, like a baton, and then pointed it at me. But wait till you meet the kid, real cute—and I don’t say that for every kid.

Okay. I scanned the rest of the data about Vergil on the sign-out sheet. I’ll see him first.

Another thing. Gil raised a finger and pointed to somewhere far away. His parents live on the other side of the state, can’t visit much, but do call every day and want to be called with updates.

I again shook my head. This was altogether way too much. I was starting to feel warm and sick inside. Trying to stay professional, I managed to say, That’s got to be tough…

Yup. Gil stood up, about to leave the room and head off on vacation, about to walk away from the end of his internship, about to move on with his life. That pretty much sums everything up: tough. Near the door he turned back to face me. Rob, keep your guard up. This is how these kids start to die.

2

Gil had cleared off, but his final words still sounded in my ears. I walked to the nearest private staff bathroom and locked myself inside. Feeling I might vomit, I raised the toilet lid, got down on my knees, and genuflected forward. All that came out was a gulp and a single weak heave. I tried to focus on breathing as I stared down at the water at the bottom of the toilet bowl. A faint floral odor barely covered the underlying smell of bleach flowing through my nose and up into my head. After a minute of kneeling like a supplicant before a porcelain confessional, chased here by my anxiety and doubt, the nausea subsided enough that I started to worry less about throwing up and more about whether anyone had seen me enter the bathroom, whether someone might knock, whether the door was fully locked.

I got up and flushed the empty toilet, covering my acoustic tracks in case someone outside was listening. I hadn’t filled the room with the stench of vomit, and I wasn’t going to have to worry about how my breath smelled, but I almost wish I had vomited—locking myself in the bathroom on a false alarm seemed to me, in the moment, more embarrassing than if I had thrown up. I turned on the faucet and felt the cold water flowing through my fingers before gurgling down the dark drain.

My mind was scattered. Maybe Dr. Bergman, my clinical preceptor in medical school, was right when he warned me I was too sensitive to deal with all that I was going to have to face during internship. I cupped my hands, brought my face down into the water, and submerged. I had broken into a sweat when I first had to draw blood on my medicine rotation, even though the patient, a big burly guy, told me not to worry. I raised my head and looked into the mirror, drops of water coursing down my nose and cheeks.

Wetness. Image of the lake in the mountains came back to me, and of the children at the beach, splashing, wet, ecstatic. The summer before I went to college. My friend’s mom was a nurse who had worked at this summer camp for kids with special needs for years, she had encouraged me to apply. My cabin of young teenage boys. Baseball bats and life-preservers, and also crutches and wheelchairs, breathing treatment nebulizers and even ventilators for some.

Today, this moment, started back then. In my second year of medical school, right from the beginning of my love of pediatrics, I wanted to take care of kids who always seemed a bit neglected, the ones with uncertain diagnoses, rare diseases, complex conditions. But now, maybe I just wasn’t cut out to do this. If only I could look ahead a decade into the future, see whether I could do what I wanted to do.

The cold tap water coursing down my fingers brought me back to the present. I closed my eyes. Maybe yes or maybe no. I was getting ahead of myself, as I had throughout medical school. I just needed to make it through today. And to do that, I needed to be not in here hiding but out there, seeing patients. I opened my eyes, turned off the tap, dried my face and hands, and opened the door.

3

Vergil’s room was dimly lit. From the doorway, I viewed the crib from the side. The railings were fully raised. A foot above the top of the rails dangled a motorized mobile, from which a flock of birds—yellow, blue, green, orange, purple, red—revolved in ceaseless slow-motion flight. On the far side of the crib, a beige curtain separated this bed-space from the next. Mounted on the wall and turned to be seen from where I stood, the cardio-respiratory monitor traced out the peaks and valleys of a regular heart rhythm and the rock-a-bye waves of inspiration and expiration. Nearer to me, an IV pole supported the infusion pump and a large yellow bag of the TPN. From the pump, the tubing ran through the rails of the crib and disappeared under a white blanket that lay rumpled on the side of the crib, blocking my view, so that all I could see of Vergil from where I stood were his feet and legs.

I drew closer until I was standing next to the crib and peered down. He was lying flat on his back, watching the birds in their endless circular migration, his eyes tracing their arc. Then Vergil turned and looked straight at me, and after a long second, he smiled—a big wet open-mouth smile, his glistening tongue seeming poised to set loose a laugh, his nose crinkled, his eyes focused and gleaming. I smiled back. With sudden vigor, he started to move his hands up and down, slapping them against the mattress. He made no noise, no vocalization, only the thump-thump-thump of his hands.

From behind the curtains of the adjoining bed, Vergil’s nurse stepped forward.

Somebody likes you, she said, smiling herself. He does this when he gets excited.

Nice to get off to a good start. I looked back down at Vergil, who was still beaming up at me, his smile more relaxed but still mirthful, infused with some inner joviality. He’d probably be a lot less excited and more worried if he knew that I’m just the brand-new intern. I glanced up at the nurse. All right if examine him?

Sure. She gently turned up the bedside light. Vergil squinted his eyes shut. With each incremental increase in brightness, the green hue of his skin grew more pronounced. I leaned over the crib rail, unsnapped the bottom of his onesy and pulled up the front of his outfit, and got my stethoscope into position. A faint odor of apricots emanated from his body. His abdomen was a complex web of scars from where his stomach and intestines had once protruded, interwoven with several dark blue veins, dilated and twisted. I lifted his shirt further up, and placed the bell of the stethoscope on his thin chest, just to the left of his sternum, listened, and then moved further up his chest, shifting his shirt, exposing a clear dressing, like a small piece of cellophane. Underneath the dressing, the light-blue central venous catheter, connected on the other end to the TPN pump, pierced his yellow-green skin and dove through the veins of his arm and shoulder and upper chest to the very center of his body. So simple and delicate, so powerful and contradictory, simultaneously keeping him alive yet threatening his life. I listened to his lungs, lightly palpated his abdomen, noting the hard liver edge and large protuberant spleen, then pulled his shirt back down and snapped his onesy back together. The nurse lowered the light back to dim.

Vergil opened his eyes again. Without thinking, I reached out and stroked his hair. His mirthful look returned. In a flash, I wondered how he lived and stayed happy, with his exuberant wide wet mouth, through countless examinations, day to day to day, all the while the birds circled ceaselessly overhead, his life on the line.

4

Mid-morning rounding from bedside to bedside, moving down the corridor haltingly one room to the next, our entire team’s entourage of two senior residents, four interns, and three medical students followed our attending, Dr. Finns. Gray-haired and vigorous, Dr. Finns was the most prominent general pediatrician at the hospital and had founded one of the largest pediatric primary care practices in the city. Wearing a blazer, he walked quickly and knew everything, especially about childhood infectious illnesses. When I was a medical student, he was the kind of attending I idolized. If there had been a competition for knowing the most, he would have won. He would listen closely as the interns presented the cases and discussed diagnosis and treatment with the residents, and then he would add his brief authoritative addendum to the conversation before we turned to the next patient. We had already rounded on a toddler with croup (not common for this time of year, but we’re in the midst of an unusual parainfluenza outbreak), another with hand foot and mouth disease who needed IV fluid rehydration (probably due to Coxsackie, a classic summer enteroviral pathogen), and a third child with a retropharnygeal abscess (clindamycin’s a good antibiotic choice, we’ll have to see if the abscess needs to be drained).

We approached Vergil’s room. He was sitting just outside the door in a baby seat swing. As we gathered around him, Vergil slammed his hands down on the little tray at the front of the swing and opened his mouth wide. His nurse, spying us across the ward, came over. I started to present Vergil to the team.

This is Vergil, coming up on his ten-month birthday next week, who has short gut syndrome, jaundice from liver dysfunction, and had a fever last night and was started on empiric antibiotics pending culture results.

As I shuffled my notes, preparing to read off some of his vital signs and lab values, the nurse spoke up. About an hour ago he had another fever spike to 102.9 degrees, but he’s afebrile now.

Oh. Damn, I should have known that. Should we re-culture him?

My senior resident, Jen, shook her head. We started the antibiotics less than 24 hours ago. If he spikes after 24 hours, we re-culture him then.

And when, I could not help but ask, would we have to remove the line?

Never, if we can help it. Jen’s expression had turned stern. He’s got no more vascular access sites. This is his last line and he needs to hold on to it as though his life depends on it, since, more or less, it does.

Dr. Finns summed up. Consult with Infectious Disease to make sure we have the best antibiotics on board. Let them guide us. Otherwise, we stay the course and do not remove that precious line.

With Vergil’s treatment plan on pause, the team moved on.

5

After rounds had finished, the late morning and early afternoon had whirled past with discharges and new admissions. I