Adapted and reprinted, with permission, from a Discover Magazine article appearing in “Vital Signs” – October 2011 issue
By Will Smythe
The ceiling fan in our bedroom was just slightly off-balance, and I usually listened to the rhythmic soft clicking sound it made overhead, right before drifting off to sleep. Tonight, however, I didn’t notice it at all, as I lay and stared up at the blank darkness.
I was struggling in the underbrush of my mind to find a rivulet that might lead me to a familiar stream – the stream in which I lay each night – the one that usually ferried me into the larger, slow moving, gentle river of sleep.
I hacked, and hacked away at the dried brittle bushes of concern, and the tall tough grass of anxiety, but could find no water.
I remembered a passage from a novel I had read some time ago, Barbara Kinsolver’s Poisonwood Bible, depicting American missionaries and their four children living in the jungles of the Congo during the 1960’s. At one point in the story, the youngest child is bitten by a dangerous poisonous snake.
The mother ponders her potential loss…
“Each child has its own entreaties to body and soul. It’s the last one, though, that overtakes you.”
I spoke the last few words of the passage out loud, quietly, I thought – but evidently just loud enough for my wife to raise her head up next to me with a sleepy “what?” before dropping immediately back to her pillow, and the deep sleep that was escaping me.
I couldn’t take it any longer. I got up and stumbled over to and out the bedroom door. I then felt my way down the unlit hallway to the room where my sixteen-month old son was sleeping.
My eyes gradually adjusted to the dim nightlight in the corner of the room. It shone through the rails in the crib so that I could just make out his little figure, in bas relief under a blanket, lying motionless next to his beloved stuffed bunny. He was sleeping on his side; his form reminding me of a letter “C” – one so fat that is appears to be curled up on itself. I reached down and for a long moment gently rubbed the bottom of his soft, bare foot.
The skin of a toddler feels, no, is, perfect. It’s like velveteen – without blemish, and cushioned beneath by millions of tiny, uniform globular fat cells that are distributed evenly and lovingly over the entire surface of a healthy child’s body.
This was my last child – a final miracle of conception – an amazing and wonderful gift delivered to me, literally, in my late forties.
My mind wandered again to Kinsolver…
“But the last baby trails her scent like a flag of surrender through your life when there will be no more coming after…”
This was my last baby.
I walked out of his room and back down the hall.
“…that’s love by a different name. She is the babe you hold in your arms for an hour after she’s gone to sleep… you rock by the window, drinking the light from her skin, breathing her exhaled dreams… She is the one you can’t put down.”
I lay back in bed, and despite closing my eyes again took up the same blunt machete. I knew well that I needed rest – I had a big case scheduled the next morning. I had been a surgeon for more than twenty years now, but had not, in fact, worried sleepless about a case like this for more than fifteen of them. This was the source of my insomnia.
Tomorrow I would operate on Ian – who was lying in his bed in the hospital now, curled up on his side just like my son, and the exact same age as he.
A couple of weeks earlier, I had been reviewing my emails late in the day when I found a message flagged “Important” in the subject line. It was from Kelsey, one of our hospital’s new pediatric surgeons. “Consulted regarding a 16-month-old with a middle mediastinal mass,” her message read. “Compression of trachea. Would love your thoughts.”
The mass Kelsey referred to in her email was in an area where a lot of things can go wrong, what we call the mediastinum—the middle of the chest between the lungs, where several important organs, such as the heart, trachea, and esophagus, reside. In medical school, it was referred to as a “very busy intersection” anatomically. It is where our body’s sustanence – food, is collected and moved to the digestion factory below. It is also where our cellular sustanence is addressed – oxygen collected by our airways, and blood later laden with this gas, as well as glucose (thanks to the aforementioned factory) is distributed by the world’s most effective and reliable pump – the heart.
As a thoracic surgeon, I specialize in operating on organs in this area and often consult on cases with colleagues. A handful of times a year, these consultations involve children.
I responded that I’d be happy to speak with her, and in less than 15 minutes she was tapping on my door. Kelsey was not one prone to hyperbole, and was obviously very concerned about this case, so I quickly pulled the CT scan up on the computer as she relayed the details of the case. The patient was a 16-month-old boy who was developing normally but had recently been diagnosed with “asthma”.
The child had been admitted to the hospital because of increasing stridor, a high-pitched sound made during inhalation, or breathing in air. Stridor indicates a narrowing somewhere in the main, or proximal, airways—the area of the respiratory tract between the vocal cords high in the neck and where the trachea, or windpipe, branches to meet the two lungs. Stridor is often thought to indicate asthma, but it usually doesn’t.
The origin of the word stridor was likely related to illness in children, as it turns out, as it first appeared in the seventeenth century, and is derived from the Latin word stridere – “to creak”. There were a number of diptheria epidemics in the 1600’s in Western Europe, and it is quite reasonable to assume that this disease, which caused upper airway obstruction in children as the primary cause of death, is responsible.
Asthmatics make a different sound: a wheeze. Wheezes occur during exhalation, or breathing out, and imply obstruction of the smaller airways that are in the lungs themselves.
I was immediately concerned about the child’s admitting diagnosis of asthma due to this discrepancy – asthmatics don’t often have stridor, and that complaint would suggest that there was something else wrong.
The boy’s name was Ian, and my concerns were substantiated – it was clear that his breathing problems were not likely caused by asthma. The CT scan images showed a five-centimeter mass—about the size of a lemon – narrowing his trachea by more than half and encasing the adjacent esophagus, which carries food from the mouth to the stomach.
It looked as if some malevolent bees had built a rounded, ill-formed hive in Ian’s chest.
I took in a deep breath: “That looks bad, Kelsey.”
Kelsey placed her hand over her mouth, and her brow became furrowed. Like all thoughtful physicians, she now began formulating in her mind a list of possible causes for this child’s presentation. Leaping to conclusions when trying to diagnose is best avoided – it could lead to an endless process of testing for every possibility, and in some cases – the wrong treatment. Experience is the mother of intuition, but this must alway be tempered by the process of deductive reasoning that we learn in medical school – the development of a “differential diagnosis”.
“Yeah,” she replied. “It may be malignant. I’m worried about a sarcoma.”
We knew that about half of all mediastinal tumors in women were malignant —aggressive cancers that grow into surrounding organs. Such tumors can take various forms. Sarcomas are malignant tumors of connective tissues such as muscle and bone. Tumors can also form in the lymph glands, the small organs of the immune system that filter bacteria from the bloodstream. Mediastinal tumors are rare, however. A total of 10,000 children are diagnosed with cancer every year in theUnited States, and mediastinal tumors account for about 100 of those cases.
“If not a tumor, I guess this could be a fistula,” Kelsey said, “with a chicken bone or something lodged there and causing an infection.”
A fistula is an abnormal connection of tissue between two organs. There are a group of congenital (created during development) fistulas that can connect the trachea and esophagus, which grow from the same embryonic tissue. If a child swallows an object that lodges in the fistula, it can trigger an infection that may result in an inflamed mass. However, Kelsey said that Ian’s white blood cell count and other tests that would indicate an infection were normal.
I considered whether we should get other tests, such as a biopsy or an MRI. “We could,” Kelsey replied. “But if the mass enlarges, it will block the trachea completely. I think we just have to go for it.”
We also knew that either of these tests would require sedation, as sixteen month old children did not have a predisposition to responding to requests to lie still. The sedation itself could be dangerous with a mass pressing on the trachea – as the child relaxed, the weight of the mass could close the airway off completely.
We discussed the challenges of removing Ian’s mass surgically. If it was attached to the esophagus extensively, we would have to remove much of the organ and replace it with a section of the stomach. The tracheal part of the procedure could get even more complex.
The trachea doesn’t heal as reliably as the esophagus, and only a small amount of tissue can be removed from it and still allow for reconstruction, or putting it back together again – giving us a narrower margin of error in the event of damage and subsequent repair. The complexities and risks were so great that Kelsey and I sought the input of other doctors as well. Kelsey called her mentor at the pediatric surgical program where she had trained, and I called a pediatric surgeon who had trained with me years earlier. These colleagues felt surgery was unavoidable.
We tentatively scheduled Ian’s operation and went to see him and his family in the pediatric ward. The parents were devastated, and in tears throughout the discussion.
Ian stood up in his crib in his diaper only, clutching a little stuffed dog and sucking on his pacifier, staring at me the entire time. I knew that he was just curious, and probably scared of the stranger in the long white coat, but I imagined that he was trying to discern if I was someone’s daddy, and if I understood what was at stake. I wanted to tell him I was, and that I would take special care.
His little body looked exactly like my son’s – the same little pudgy arms and hands, the same chubby legs and most certainly the same soft feet that I felt in my son’s crib a few nights earlier. If you were to substitute my son’s bunny for his dog, and change the color of his hair, they would almost be identical.
It had been more than fourteen years between children for me, and I had not had to operate on a child the exact same age as mine since finishing my residency. Pediatric surgeons, of course, did this all the time, but my involvement with pediatric surgical cases was infrequent now. I immediately felt uncomfortable with the idea, and I couldn’t bear to look at Ian for more than a few seconds.
After several moments, I realized that Kelsey had been speaking to the parents for some time while I was having my quiet existential crisis. I took a deep breath and forced myself to enter the conversation.
We did our best to assuage the parents’ fears, but this was a lot of surgery for a little person, and it involved a great deal of risk. Whether or not we found cancer, the outcome might be bad.
I glanced back one more time as we left the room. Ian was grasping the rails of the crib, and his little face was pressed up between them, the shiny metal bars framed his blue eyes, making them stand out even from a distance – eyes that were the same color as my son’s, of course, and that followed me out the door.
After a night of little sleep for me, and likely none for the parents, the day of the operation arrived. I waited for the last moment to go down to the operating room, letting Kelsey make the preparations with the anesthesiologists, nurses and technicians. There were intravenous lines to be placed, the breathing tube had to be inserted carefully due to the mass pressing on his trachea, and Ian had to be anesthetized, positioned with his right side up, his skin cleansed with antiseptic solution and draped with sterile cloth sheets.
I waited until the last moment on purpose – so all I would have to see was the square of skin where we would operate, and none of the remainder of his little, all too familiar form.
Despite my anxieties, which I did not share with Kelsey, I was able to move ahead with the operation – by sublimating them. It is a strange tightrope you walk in this business. You must be engaged with your patients at a personal level, or risk making decisions on data alone, rather than using data as a guide for your actions – actions which must also be influenced by the human beings on the other end of the knife, and the nuanced differences between each and every one of them. You must strive to understand the pain and suffering of others, and work tirelessly at relieving it, but be willing to inflict pain for a period of time to make someone better. Finally, you must be able to cry after a case when it goes badly, but never find yourself putting someone’s life in danger during an operation by having your vision, and your skills along with them, blurred by tears.
When many surgeons operate, they use magnifying glasses, or loupes, to increase their ability to see small details in the operative field. These glasses are expensive, and are usually stored in padded wooden boxes between uses. I have always thought that when I open that box and remove those glasses, that I take my anxieties and fears and place them in the empty space that results. I shut the box and leave them there until the case is over, and put them “back on” when the glasses come off, and are placed back in the box.
Every now and then, when things aren’t going as planned in the operating room, I glance over at the wooden box, and remember.
We made an incision in his chest and placed retractors to make room between his ribs. The mass was immediately evident. It was oval-shaped, with an irregular contour, like the surface of a reddish-tan rock. We both felt it.
“It’s fixed and firm,” said Kelsey, not needing to mention that this was consistent with a cancerous tumor.
We began by working our way around the mass with surgical scissors to the back wall of the esophagus. It was a struggle.
“It’s definitely involving the esophagus,” I said. “Let’s try the trachea.”
Kelsey was a skilled young surgeon, but using a variety of tools, including an electric scalpel, we could not free the mass from either structure. It was too firmly attached. While working around the mass, we spotted an enlarged lymph node nearby.
“That’s not a good sign,” I murmured. “If this is tumor, it might have spread there.”
We worked without speaking—four adult hands in a very small space. A sense of foreboding was accumulating in the room around us like fog. What if we couldn’t remove it at all?
Finally, I made a desperate suggestion.
“Let’s divide the mass,” I said. “Let’s just cut in in half – maybe we can see from another perspective how it’s attached to the trachea and esophagus separately—we aren’t making progress.”
This was something we preferred not to do. When removing a tumor, an “en masse” approach is best, meaning the entire tumor is extracted intact with any surrounding tissues attached, which gives surgeons the best chance to leave no cancerous tissue behind.
“Agreed,” Kelsey replied. “Maybe we can save some of the trachea that way, make the repair easier.”
I took a scalpel and carefully incised the mass. After a couple of passes, it literally “cracked” open, like an unripe peach.
We both stared into it. Ian’s heartbeat, a beep on the anesthesia monitor, registered five times before either of us spoke.
There was something dark and linear at the center – it looked horrifyingly like a slug.
“What is that?” Kelsey asked.
I reached down and grasped it with a pair of forceps.
“It’s firm,” I said.
Kelsey adjusted the light overhead—there was a glint of reflection.
“Metal?” I asked. I carefully pulled the object free.
It was dark gray, oval, and covered in a thick layer of semi-opaque mucus.
I held it up in the light between us.
It was a leaf.
“A leaf?” Kelsey asked. “A leaf?”
Her eyes were squinting above her mask, and her forehead wrinkled in disbelief. Suddenly it was clear. The mass formed to protect Ian’s body from the leaf and had taken on a life of its own. We both started laughing. The nurses clapped.
There was no cancer; Ian was going to survive.
During the rest of the operation, we found that the leaf was nestled in a place where the normally cylindrical esophageal wall bulged out – a diverticulum in medical jargon. It all added up.
Like many toddlers, with a predisposition to placing anything interesting into his mouth, Ian had swallowed an oak leaf months before, and it had lodged in the diverticulum, unable to pass. The leaf’s pointed tip had eroded into the trachea and eventually, after white blood cells homed in on the region to try in vain to heal it, like those malevolent bees coming back to the hive, a scar progressively formed around both the inflamed tissue and the leaf.
The young mother and father were incredibly relieved at the news, which Kelsey and I delivered immediately following the operation. They hugged each other, and after several moments, Kelsey and I left the room quietly, the two of them still embracing.
The fact that the mass was not a malignant tumor didn’t change the urgency behind the operation. If Ian’s diagnosis of stridor and the surgery had been delayed, the mass could have led to the complete obstruction of the airway and sudden suffocation, or a leakage of esophageal contents, laden with bacteria from the mouth. If leaked into the trachea, these contents could have led to pneumonia, or if into the mediastinum, to sepsis and vascular collapse. We were relieved to find that the mass was not cancer, but left untreated, a simple leaf could very well have ended Ian’s life just as effectively as an unresectable tumor.
Ian left the hospital after only a few days. He was going to be fine.
I got home late the night of the operation, after everyone was asleep.
I was exhausted, but stopped in the kitchen on the way to bed, my usual ritual when coming home late. I flipped through the day’s mail stacked over by the coffee pot, and walked over absentmindedly to see if there were any leftovers from dinner in the refrigerator.
After determining that neither the bills, nor the cold cheese pizza looked all that interesting, I closed the refrigerator door. As it shut in front of me I found myself looking at a recent picture of my little son taped there – my wife had evidently placed it there earlier in the day. He was wearing a bib with the words “I LOVE DADDY”, and his little face, with tousled red hair the same color as his mother’s, and blushing apple-round cheeks peppered here and there with the remants of an Oreo cookie. He was smiling that unconditional loving and trusting smile that the muscles of facial expression cannot seem to ever quite recreate past the age of five or six.
I shook my head, picked up a nearby dishtowel, and wiped the tears that suddenly came without warning to my eyes. I walked out of the kitchen toward my waiting bed, but stopped for a moment at the bedroom door, and decided to keep going on down the hallway.
I walked quietly into my son’s room, and lifted him gently out of his crib where he was sleeping, into my cradling arms. I carefully felt his little chest under his soft pajama top, right where I had made the incision in Ian’s just a few hours earlier. His ribs were so small – perfect little curved arches, that like all of the other bones in his body would inexorably thicken and lengthen over time – despite my wishes that he stay this size, this way, forever.
I felt his small, but strong, heart beating beneath the surface, and the rhythmic, barely perceptible movement of his chest wall as he breathed in and out.
I hugged him tightly, and then sat with him for a long time in a rocking chair, where I, as the missionary mother had suggested, rocked him by the window, “drinking the light from his skin, breathing his exhaled dreams.”