Canna Lily

They named her after two flowers, Canna Lily, as if to counteract the gloomy predictions of the doctors, who said she would not live to bloom in spring. Less a blossom than a blighted bud, Canna Lily sprang from a seed endowed with a trebled chromosome. The embryo grew but formed awry.

It was evident at first glance, in the epicanthal folds of the delicate dark eyes, the too-prominent tongue, the decreased muscle tone of the small-for-age newborn. Certainty grew as one listened to the buzzing murmur that greeted the ear as stethoscope met chest, a serious heart anomaly, and it was confirmed in the black-and-white chromosome analysis, faxed from University Hospital’s genetics lab. It was clear, and real, except to her parents.

“She is not Down’s, for the Lord has told me so!” There is no arguing with this. Her mother, gaunt with unacknowledged worry, refused our explanations. Her gentle, bearded, farmer father looked on frightened, uncomprehending, sad. Complicating this delicate situation was the fact that Canna Lily’s mother was a member of our hospital’s staff. A deeply religious radiology technician, who also ran the film library, she wielded her Bible like a sword, perhaps hoping to use its power to protect and save this only child of her later life. One suspected that at age forty, after years of the gnawing pain of infertility, she saw this child as both symbol and salvation of a lifetime of faith. Faith, which teetered when God finally gave her a pregnancy, long desired, that then led to this frail, imperfectly-formed child.

She proclaimed her daughter whole, with fervor and fire, but as she spoke, her hands twisted and untwisted the tiny garment in which she planned to dress Canna Lily for her trip home. Many private interviews with our soft-spoken and compassionate director of neonatology bore no fruit. Declining most of our proffered interventions (admittedly inadequate to the enormity of Canna Lily’s complicated internal derangements, but all we knew to offer) the adamant mother and confused, compliant father took their fragile flower home.

Of her many problems, the fatal flaw for Canna Lily was aspiration. The tender muscular ring that kept milk in her stomach and out of her lungs just did not work adequately. One night, while her mother worked a shift at the hospital, Canna Lily’s father entered her room to find his daughter purple and still. A frantic call to 911, an ambulance ride in the cold November night ensued. Rapid resuscitation by the medics and a fortuitous location of the family’s home close to the ER saved the baby. During this hospitalization, Canna Lily’s mother grudgingly accepted an apnea monitor. With guilt I gave it to her, knowing it was probably no more protective than the bit of red ribbon they kept atop her hospital bed, but I was unable to offer anything of substance. Oh, we gave advice on angling the crib’s flooring, and gave medicine to tighten the baby’s tiny esophageal sphincter, but how inadequate! We could not fix her. We arranged for Canna Lily to meet the Specialists, who might operate to improve the vital muscle’s function, but they shook their heads—too many other problems, tissue yet too poor to work with. A feeding tube was refused. Her mother said, “She doesn’t need that. Anyway, she’s getting better on her own.” She tossed her dark hair and smiled defiantly, as a tiny muscle under her eye twitched. I sighed, turned away. We were not her enemies, but I felt she thought of us as such. It confused and roiled me.

Why this mother attached herself to me, I cannot say, but regretted daily. Now, having been part of the team that cared for Canna Lily while she was hospitalized, I had been adopted as confidante, despite my affiliation with “those doctors” who only seemed to bring more and more bad news to this troubled family. It seemed that every time I came to the radiology library for a film, there was Canna Lily’s mother, bubbly and hopeful, speaking to me about her daughter. She showed me pictures, described with pride the latest (miserably delayed) achieved milestone, included me tacitly in her belief that all would be right. How I wished she would not speak to me. Every time I looked at a picture of the appealing, doomed girl, dressed with such love and care, and complimented her appearance to her mother, I felt that I was a traitor. Canna Lily and her family were a ship headed for the rocks, as far as I was concerned, and I did not want to be emotionally on board, or even watching from the far shore, when that ship went down with all hands. As a perpetually fatigued resident, I thought I was burdened enough, and didn’t want yet another bit of my heart to sink with these people to the murky depths. So, I avoided the radiology library when I could (sent the medical student) and listened with what I thought was barely concealed discomfort when I had to go myself. Canna Lily’s mother never seemed to notice my distress; perhaps I was a better actress than I thought.

Then, it was February, a midnight snowfall, a quiet shift in the Emergency Room. Dozing upright in the nursing station, I was jolted awake by the static of the EMS “squawk box”. The tinny voice of the Basic Life Support Unit’s radioman sounded shaken: “Roger, Hope Hospital, be advised we have a pediatric cardiac arrest, repeat, a pediatric arrest, aged…” The box degenerated into static and the howl of the siren, and try as we might, we could coax no more from the infernal machine. No expected time of arrival, no age! We opened the crash cart, contemplated the multiple sizes of laryngoscope blades and endotracheal tubes within and tried to prepare ourselves.

A flurry became perceptible at the ambulance entrance, and a portly, blue-clad medic rushed in, his face flushed and sweating. He held his balled-up jacket tenderly in his arms. A female medic, equally red-cheeked, was apparently “bagging” the jacket, as they advanced in a rapid, awkward two-step. As they lay the bundle on the gurney, a pale cocoa arm, no bigger than a doll’s, protruded limply in extension.
Our team descended upon the body, assaying lines, trying to ascertain vitals. I attempted intubation: the windpipe was full of milk.

As initial data were shared by team members, it became obvious; the child was truly gone. There was no blood pressure. Her EKG was flatline; her skin felt as cool as marble. The first few instinctive resuscitative steps performed, we took stock. It was time to stop trying. The pace of our efforts slowed. The team leader cleared his throat, preparatory to the anticipated cease and desist announcement.

Just then, a wild man tore into the ER, bearded, his strongly muscled chest bare despite the cold, and ran to our gurney, wailing. I looked up briefly, into the contorted face of –I know this man—and then glanced down again from my place at the head of the bed, suddenly registering that the upside-down, waxen fawn features of this baby were those of Canna Lily.

The bearded man looked right at me, recognized me, called my name. “DO something! HELP her!” Our team eyed one another as the medics restrained the distraught father. What could we do? It was wrong; it was inappropriate; but we continued the code.

I felt that I was a fraud, a monster, as I ground an interosseous line into Canna Lily’s delicate leg, attached the IV tubing. As the epinephrine flowed in, I watched the monitor and prayed for no response. What if we resuscitated a heart, but no brain? Certainly, her already stunted gray matter had been insulted beyond belief. What if at this moment I was helping to create a lingering pediatric intensive care unit disaster? I imagined the unit nurses whispering, “They coded her?” and shaking their heads.

By now, the baby’s father, who should have never been in the treatment area, and her mother, who was escorted sobbing from her car, had been herded into the Quiet Room, away from the fray.

The members of our team, unobserved by relatives, reached a consensus quickly. “Let’s call it.” So, at 4:35 a.m. Canna Lily was pronounced, having “not responded to pediatric advanced life support/advanced cardiac life support protocols”, less than five months after she entered this world.

“You know this family?” the attending ER doctor asked. In the shorthand of ER-speak I knew what this meant. I would be the one to tell them. The team scattered, probably relieved to return to chest pain, a thigh laceration and the lone vomiting alcoholic.

I swept the sheets of our medical litter, dressed Canna Lily in a tiny hospital gown. I wiped blood from around her interosseous site, washed her face, and mentally reminded myself to warn the parents about the endotracheal tube (as an “unexpected death” no lines, tubes, interventions could be removed prior to the medical examiner’s approval). I took my time, dragging my feet. I wrapped her in a sheet like a papoose and turned the rosy glow of a warming lamp on her face. She was so cold. I laid her diminutive body in the center of the stretcher, and in an unthinking reflex, raised the sides of the hospital gurney. This infant would never roll off.

As I walked to the Quiet Room, I tried to brace myself, to remind myself of what I must say and do. Trembling inwardly, I realized that this was the first time I’d ever had to give this news to people I already knew. Despite my internal girding, I was unprepared for the look of hope and trust that showed on the mother’s damp and reddened face. “How is she, Dr. Lyons?”

“I am so terribly sorry, she has died. We couldn’t save her.” How we endured the storm that followed, I do not know. The cries, the burden of guilt; hers, the apnea monitor was not on; his, forgot to check her at 1:00 a.m. as was his wont; mine unspoken, I helped code a dead child, I always avoided this family, I don’t want to be here. It was almost overwhelming. I held this woman, whose beliefs were inexplicable to me, as she saturated her high collared blouse with her tears. I delivered the required messages: Not your fault; God’s will; did all we could; yes, you can see her.

If I had avoided radiology in the past, I shunned it now.

On one of the first warm days in April, as jonquils in the hospital courtyard warmed their faces in the sunshine, I was walking down an empty hall, perusing notes on a new patient. I looked up, saw Canna Lily’s mother approaching me and no one else in sight. Overcome with an unanticipated wave of grief, I swallowed hard, then forced a smile of greeting. “Hello, how are you?” Amazingly, she was “fine”. She laughed and bubbled and talked. She whipped from her pocket a photograph of (unbelievable!) Canna Lily’s tiny grave, covered with snow and flowers. She spoke tearfully of the beautiful sermon delivered by the pastor, proudly of the numbers who attended the service, and shyly smiling, whispered that she and her husband were “trying” again. I dutifully admired the headstone, mumbled a brief commercial for chorionic villus sampling (an early pregnancy genetic test) shortly after conception, and told her, with sincerity, that I was glad to see her looking so well.

As she walked away, a bit more of the pall of winter slid from my heart. At the time, I didn’t understand why I suddenly felt so much lighter, or why I felt so grateful to this lanky, spinsterish-looking soldier of Christ. Rooted where I stood, I watched her intently as she turned towards radiology, adjusted her hair, smoothed her long skirt, and walked with sedate and measured step down the hall, her flat-heeled shoes tapping softly. I shook my head with relief, disbelief, and a sneaking sense of hope.

I still cannot understand this woman’s beliefs, fathom her inner reconciliation with the loss of Canna Lily, or plumb the depths of her faith, despite the fact that it sometimes seems essential to my own inner peace that I do so. I do, however, now go to the radiology film library myself. Sometimes I bring donuts.

Paula Lyons, MD

Original version published:
The Pharos of Alpha Omega Alpha
Summer 1997, Vol 60, No. 3