There Is Still Something To Be Done

“Dr. E,” says the ward secretary—she seems to be referring to me—“You have to do the hyperal orders.”

What’s hyperal? I ask myself, as I reach for the sheaf of papers she is insisting my way. Kathy understands immediately that I am clueless and therefore useless to her.

“Why don’t I just fill them out and you can sign them?” My eyes water with gratitude. I look down at myself, in my costume, and remember that these people think I am a doctor.

“Dr. E,” a nurse calls from a bedside. “Eddie’s IV is out. Can you restart it?”

“Sure,” I hear myself say.

Who said that? I think. The senior resident, my de facto mentor, is, in fact, nowhere to be found. This will turn out to be a chronic irritation but today the lack of a comforting senior presence in the pediatric intensive care unit creates a looming void on the ward and in my stomach.

“Where’s Dr. Miller?” I ask, and get rolled eyes in response. Don’t ask about Dr. Miller again, I conclude.

Morning sign-in rounds begin. I slog around the pediatric intensive care unit, bed to bed, crib to crib, Isolette to Isolette with the head nurse, and the various attending physicians who show up to test my mettle. My mettle. Because I’m the new one on the block. And I’m female. It is 1977 and the medical profession is overcrowded with misogynistic narcissists. The cardiac surgeon quizzed me about Tetralogy of Fallot. I happen to know the anatomy of this complex cardiac anomaly. The general surgeon grilled me on tracheoesophageal fistulas. I know this too. I am relieved that neither asked about the micronutrients in hyperalimentation solutions. Still a mystery.

Idiopathic hypertrophic subaortic stenosis. Diaphragmatic hernia. Gastroschisis. Diabetic ketoacidosis. Hyperglycinemia. Duchenne muscular dystrophy. Leukemia.

I take copious notes on my official Doctor Clipboard. I list every patient’s medical problems, outstanding lab tests, consults, and X-rays, and the day’s tasks for each child: Wean her off oxygen. Change him from IV to subcutaneous insulin. Advance the baby’s feedings by an additional teaspoon per two hours. I make a tiny box next to each bullet point and mark a triumphant X when it’s been achieved. I look mighty organized. But my clipboard is peppered with tiny question marks next to all the things I don’t understand or know how to do yet.

I really should have done more sub-internships before starting my residency, I think.

Question to self: Why didn’t I?

Answer to self: Because I was afraid of being mistaken for a real doctor.

Smartass remark to self: How’s that working out for you now, Dr. E?

Matthew’s mother enters the ward and cautiously approaches her son’s crib. He was born with massive hydrocephalus, water on the brain. It prevented much of his brain from developing and he has only the rudimentary midbrain parts, reflexively in charge of breathing and heartbeat—no higher functions at all. He was treated at birth with a brain-to-belly shunt to drain the excess fluid from his skull cavity into his abdomen where it will cause less trouble. Now his delicate facial features are dominated by the cratered concavity into which his skull has collapsed. The depression is big enough to hold a softball. His life expectancy is miniscule.

A nurse indicates that his mother wants to talk to me. She is an utterly spent single mom. She loves her son. She knows his diminished brain tissue will not support his life. She is in agony and she cuts to the chase.

“Can you do something, give him something, to end this sooner, so he won’t suffer?”

This is my first week as an intern, my first week as a doctor. I have been abandoned by my physician colleagues and the nurses have become urgently busy elsewhere. The social worker is drinking coffee in the break room with the respiratory therapist. I’m the one with the white coat. I’m where the buck stops. This will become the defining burden of my chosen profession. In one pocket, I carry The Harriet Lane Handbook on pediatric therapeutics. It’s the bible of every pediatric resident. Mine is brand spanking new. It has charts and graphs, doses, and algorithms. Not surprisingly, it doesn’t have a chapter on grief counseling. Medicine has not heard of the word “empathy” yet; it is not an admired or nurtured skill. End of life is simply the last stop on the algorithm. I fish around my pocket for other tools. I have a reflex hammer but that’s not going to help here. I have a stethoscope. It feels similarly useless.

I do the one thing that I know I am good at. I put down my clipboard, take off my coat, and sit down. I listen as Matt’s mom talks about herself, her hopes for her son, her anticipations of being a parent, and her understanding of her current reality. Her heart is broken and mine is starting to crack. But my grief can only subtly inform my reactions. This is her story. I swallow hard. We talk about the process of dying, about what Matthew will and won’t feel, about what I can do for his comfort and hers and what she can do for him. And we talk about what I can’t do. We talk about patience and together create a safe path for her through the murk of her desperation. Three days later, Matthew dies on his own schedule. The following week I receive the first thank you note of my career.

“Thank you for your support and patience,” it reads. I tuck it into myHarriet Lane.

I lived in an attic apartment. It had an old fire escape and I could limbo my body through the narrow kitchen window to sit outside on the metal stairs and enjoy the bird’s eye view. If I planned it right, I could get my coffee out there too. I’d become obsessed with being outside at every opportunity, since my work hours generally precluded exposure to fresh air and natural light. In the beginning, I’d awaken forty-five minutes early, toast a bagel, wrap it in aluminum foil to melt the cheese with the retained heat, and munch as I walked up and down the local boulevard before work. The warm humid air was soft in the early morning and the path was lined with leafed out trees. It was very beautiful. Within a month, I gave up both the breakfast and the view for a few more minutes of unconsciousness. There was always coffee and donuts somewhere on the wards. I began to have recurrent dreams that I was allowed to sit outside on the hospital steps once a day, but was chained to the railing. My dreams have never required subtitles.

Most nights, I’d cook ramen noodles for dinner. They only took three minutes, which meant I didn’t have to choose between eating and sleeping. It was easy to clean up. Throw away the package wrapper and rinse the pan. I had a folding lawn chair and a card table in my living room and a foam pad on the floor for a bed. My clothes were in category piles on the rug. My thirteen-inch black and white TV had a coat hanger replacing the original antenna. Similarly, the broken-off stub left from the power dial was operated with a pair of pliers. As homes go, it was completely pathetic. I was earning $11,500 a year and was already having to pay back medical school loans.

Glioblastoma. Hodgkin lymphoma. Acute myelocytic leukemia. Reye’s syndrome. Phencyclidine intoxication. Diabetes insipidus. Retinoblastoma. Systemic lupus erythematosus.

That first summer I worked twenty-four-hour-plus shifts, arriving at the hospital at seven-thirty one morning and leaving at ten the following morning after signing out the patients to my colleague. This on/off alternation was unbroken for several weeks at a time. Disorienting would be an understatement. Most on-call nights, I netted only a couple of hours of fitful sleep on a cot in a conference room where I was interrupted by all manner of questions and crises. Nurses and physicians would burst into the room, their messages urgent, my responses obligatory. The sleep deficit grew exponentially and gulped doses of five-cent break room coffee soon provided only the tiniest of jolts. On my days off I tried to act like a typical twenty-five-year-old until the gap between normal and bizarre became too wide to breach. It didn’t take long. I had fallen down the rabbit hole, yet I was surrounded by people who acted as if all were normal. They were so wrong. But my profession would not admit to the insanity of our training for years, and then, only grudgingly. The old guard believed that if I was only in the hospital every other night, I missed half of the learning opportunities. They said that with conviction. Meanwhile I dozed through every teaching conference, case presentation, and grand rounds, dreaming of being outdoors.

Billy, Hannah, Jillian, Edgar, Miquel, Suzanne, Frankie, Jeannie, Melissa, Elizabeth, Katie, Kimberly, Eduardo, Nicholas, Samantha, Edward, Tanner, Ryan, Tyler, Jimmy, Holly, Ben.

Jessica, a sweet baby girl, was born with her abdominal contents in a sac outside her body instead of safely tucked within. Her treatment, to make room for and reintroduce her errant organs, was an agonizingly slow process during which she was often reliant on intravenous nutrition and antibiotics. She could only lie on her back and was too fragile to be picked up. Her mom had a blond ponytail and a warm smile. Her dad was tall and handsome. They should have been pushing their baby in a jogging stroller rather than yearning over a plastic isolette. When she died, the world ended for all three of us.

Penguins. Jake’s. College Hill Bookstore. Avon Theater. Meeting Street Café. Store 24.

Penguins was a café near Brown University where I could get a sandwich called “The Mideast Peace Pact.” We actually believed that sandwich names could make a difference in world politics. It was filled with spinach, tomatoes, Muenster cheese, and Thousand Island dressing and then grilled. It was delicious, albeit not politically influential. On the “other days” of my every-other-life, I’d often go there for dinner and then I’d hit the movie theater across the street to watch anything that was playing, be it comedy or tragedy. Subtitles were okay, too. It was an intentional strategy to populate my dreams with more diverse characters and plot lines than my sick patients. One day I watched Iphigenia, the story of the Greek king who sacrificed his daughter to the gods when his ships were becalmed in the bay of Aulis on their way to Troy. Tears drenched my face as the vindictive priest enveloped her, forcing her toward her death, and the smoke of the altars obscured her father’s vision just as the winds picked up. My tears weren’t for his loss of Iphigenia but for all the losses small and large that I accrued daily.

Tasha was born with an abnormal connection between her windpipe and her food pipe. She choked on her first breath and required emergency surgery followed by tedious advancement to the normal routines of breathing and eating. When their patience waned, her parents used to kid me that they were going to hide her in her mom’s purse and sneak her out the door. I knew that they were not completely joking and found myself checking her crib after they left. I could touch their longing. One afternoon, the intimidating pediatric surgeon loomed over me as I inserted a dislodged breathing tube into Tasha’s trachea.

“Nice job,” he said begrudgingly, as I compensated appropriately for the laterally displaced windpipe. But by the next day, he’d forgotten that I’d succeeded and bullied me about something else. The rude egos of men, and the reluctant acceptance of women into the profession of medicine, were prominent features of my training. They were lessons unwillingly learned alongside patient care.

Melissa was a translucent-skinned baby girl who was born with a catastrophically abnormal heart structure. It was only partially remediable by her first surgery and she’d need to get stronger to sustain more intervention. Her bluish skin was laced with tiny blood vessels. She poked along two steps forward, three steps back as we tried not to over-stress her fragile system. Even an extra half-teaspoon of formula could cause a setback. Sometimes it seemed that a wish and a prayer was all that was keeping her afloat. Sometimes it seemed that even the weight of our wishes could sink her. Melissa’s discouraged parents withdrew and we tried to fill the gap with our belief in her. It was hard to start her daily status reports without a big sigh.

My college roommate, traveling nearby, came down for a day to visit. She’d introduced me to all the useful things I’d learned in college that weren’t covered in the course catalogue. Creativity 101 included macramé, tie- dye, batik, bread baking, weaving, quilting, embroidering, and enjoying gourmet coffee. Although there had been nothing alternative in my own learning, in between studying chemistry and biology, I’d savored her radical education books. When we graduated, I went on to medical school, and she, ultimately, to hike the Pacific Crest Trail and settle in the northwest. Our lives diverged.

I picked her up at the train station on my way home from the hospital after rounds. We savored round loaves of just-baked Portuguese sweet bread, bought brightly colored shirts and wore them, as sisters, to spend the day in the park. For a few hours, I wasn’t anybody’s doctor. Away from the hospital’s sterile palette, I reentered the full rainbow. To my delight, everyone around me was effortlessly alive. My dreams that night were tie-dyed. The next morning, I went back to work, and to green scrubs, white coats, and pale children.

Roberto had non-functioning kidneys. Beginning of his story. End of his story. He was a Buddha of a baby, puffy from steroids and fluid overload, and beloved of the staff. He was sweet and spoiled. He’d sit in his baby seat at the nurse’s station and hold court over the rest of us. Everyone knew him and would exchange health updates.

“How’s Roberto?” A colleague would ask at a conference.

“Sweet as ever,” I’d answer, “and still alive.”

That would not remain true for long enough.

Angelica, another cherubic child, was diagnosed with acute myelocytic leukemia when she was just eleven months old. Which simply isn’t fair. By any paradigm. In any universe. By anyone’s accounting. We sweated through her first round of chemotherapy until we figured out the reason for her precipitously dropping heart rate. We’d gone so far as to alert her parents that she might not survive the night. The extended family hovered in the waiting room. We all braced ourselves. And then we figured it out. A metabolic imbalance was caused by the complex chemistry of cancer cells under attack. It could be addressed with calculated interventions. She survived her initial ordeal, and went into comfortable remission. We soon considered her indestructible. Ultimately, she wasn’t. We loved her. We lost her.

Na+/K+/Cl-/CO2-. Bun. Creatinine. Acidosis. Alkalosis. Viscosity. Glucose. Cerebral edema.

Suzanne was an angry adolescent with juvenile diabetes. Whenever she got mad at her mother, she’d rebelliously skip her insulin shots, putting herself into ketoacidosis, a potentially lethal complication of her disease. She was at risk of brain swelling, malignant hypoglycemia, and metabolic chaos. She could die. She could kill herself. We all learned to manage insulin drips and complex ketoacidosis crises, thanks to her frequent tantrums. But none of us could figure out how to manage her adolescent rage.

Hepatic encephalopathy. Renal failure. Cerebral edema. Dialysis. Hyperventilation.

Patsy arrived comatose with a lethal inflammation of brain and liver. Most victims of her condition, Reye’s syndrome, died. Those who lived were never quite the same. She was a high school basketball star and the nurses put her hair in ribboned pigtails, though she lay unresponsive in her ICU bed. When her kidneys stopped working, I watched as the pediatric nephrologist talked to her softly through the insertion of a catheter into her abdomen to facilitate peritoneal dialysis. He didn’t know what she could hear and feel, and he didn’t know what she couldn’t hear and feel. So he was meticulously attentive to controlling her pain and to comforting her with his explanations. Observing him, I learned many lessons that day that were not in any textbooks. At the time, the cause of Reye’s syndrome was not known. Within a few years, it would be discovered that it was related to the use of aspirin, and the occurrence of viral infections such as chicken pox and the flu. With this knowledge, and the avoidance of aspirin in children and teens, it would be almost eradicated. But at the time, we still had a case or two a year. They rarely ended well. At one point, we flew in an experimental drug from Seattle. A sulfur-based compound, the entire ward reeked whenever it was administered to a patient. It wasn’t the answer. We didn’t have the answers, and at that time, we hadn’t even zeroed in on the right questions.

Baby girl Doe was born in a public bathroom stall. Her mother didn’t know she was pregnant and the baby, born head first in the toilet had already suffered brain death upon arrival in the emergency room and admission to the ICU. We kept her on life support for several days, supporting her physiologic systems, monitoring her brain function, until we were sure the effort was quite futile. When her final EEG showed no brain activity, and consensus was achieved, I wrapped her in a baby blanket, disconnected her from life support, and rocked with her in my arms while the rest of her body shut down. Her mother had disappeared. That wasn’t the only time I would rock a dying infant or sit by the bedside of a dwindling child. Elisabeth Kübler-Ross had her stages of dying. I had mine. I knew that to be present and that to provide witness was a part of my responsibility. Even when there is nothing else to be done, there is still something to be done.

Bronchopulmonary dysplasia. Respiratory distress syndrome. Hyperbilirubinemia. Neonatal abstinence syndrome. Patent ductus arteriosus. Prematurity. Congenital adrenal dysplasia.

My PICU rotation ended and I transferred to the neonatal intensive care unit at the local maternity hospital. Unlike the all-age children in the pediatric ICU, the NICU was exclusively for critically ill newborns. Every patient was small enough to fit into a plastic Isolette or onto an open warming table. Many were tiny enough to wear doll clothes. Sometimes the nurses would string a clothesline between IV poles to hang out the tiny hand-washed garments. It produced a comical tenement effect in a generally humorless environment. Sometimes we wrapped the tiniest babies in Saran wrap to maintain their body temperature because their thin skin and lack of body fat left them vulnerable to hypothermia, and overhead heating lamps would dry them out too much. They were just too early for this world. Often a large percentage of the baby’s body surface was obscured by tubes, tape, and monitor patches. All our equipment was micro-sized to meet their scale. But their challenges were massive.

Our work shifts started early and ended late. Every third day they didn’t end at all but instead oozed into the next day. On these on-call nights, I would nap fully- clothed on the floor of the conference room using my coat as a pillow. Our official rooms, the ones with the real pillows, were too many staircases away to respond effectively to emergencies. In a neonatal emergency, every second counted. The conference room was small, and I would be nudged into semi-consciousness when the door was pushed open against my outstretched legs by nurses with questions. Or I would be jolted into full wakefulness by the insistent voice on the phone reciting the litany of early morning lab results. Awake and grubby, I would wash my hair with baby shampoo under the faucet in the bathroom sink, struggling to adjust the water temperature while bent awkwardly under the short water spout. The showers were as far away as the pillows. Eventually I would have to make a brave foray into the basement laundry room to sweet talk the ill-tempered attendant into giving me some clean scrubs. Each time she acted as if this was the first time we had ever had this conversation and as if her job was to guard rather than distribute the fresh uniforms.

I first met Sarah when she weighed three pounds and I was an undernourished one-twenty-five. Traveling very different paths we’d ended up in the special care nursery at the same time. We shared a lot of innocence. She was a tiny child, born ten weeks early, dark-haired, brown-eyed, with the delicate pink optimism of the neonate who was going to recover very well. I’d wrap her in a soft cotton blanket, scoop her out of her plastic crib, and carry her with me on work rounds. Holding her quelled my urge to reach into every plastic baby bin and caress each infant as we discussed their hospital courses. Excessive physical contact with sick preemies was generally frowned upon in those days— long before the notion of therapeutic touch had been introduced into medical care, before neonatologists celebrated kangaroo moms and simulated pouches for the newborns. But Sarah was lucky to graduate quickly from the vulnerable category. Her parents were grateful that their daughter had a champion amid the anonymity of intensive care. They’d hand her off to me when their own visits were over and I’d rock her on my lap while I wrote my progress notes. Sarah and I started and ended many days together. The night nurses let me feed her, and though I knew how to manage pulmonary hypertension, sepsis, and necrotizing enterocolitis, I was frantic in the face of her hiccuping. They laughed at my panic and I relished their good humor as they taught me how to feed and burp the babies who were well enough to be treated like almost normal newborns. Generally, there was precious little to laugh about in the special care nursery at three in the morning.

Before morning rounds, we poured scalding coffee into tripled plastic cups and dumped in clumped powdered creamer and too much sugar. The aroma of the coffee mixed in with the smell of the chemical residues of the overheated cheap plastic cup. Only the candied aroma of dissolving sugar was a comforting link to the simple pleasure of a good brew. There was no time to savor the drink or even let it cool. This was no soothing welcome into the day but rather a utilitarian beverage to shock us into work mode. The steam curled toward our noses long before the smell arrived, and the taste was experienced only briefly before our burned tongues lost sensation.

We worked, surrounded by ICU smells. The synthetic stink of pine-masked disinfectant soap was tempered by the delicious innocence of golden baby shampoo. The earthy stench of dirty diapers mixed with the musty sweat of scrubs worn too long. If grief had a smell it would be a mix of salt water tears, smeared makeup, soured breath, and unbathed vigils. Anxiety would reek of acrid antiseptics, failing deodorant, and vending machine chips. Compassion would smell like fresh tea, exhaustion like the cardboard of old pizza boxes with just the wax paper and a few crusts left. Sanity smelled like outside, like the fresh evening air that could only be found when the hospital’s revolving doors expelled me and I breathed deeply, headed home.