“Evoked potentials have improved,” Bob said softly from behind the wires that engulfed him like technicolor linguini. By letting off CSF with the drainage tube, we had relieved some of the existing pressure on Rebecca’s brain stem. This improvement was to be short-lived.
Rebecca’s tumor showed itself as we peeled the dura away from the left side of her cerebellum. Firmer than the surrounding brain tissue, the mass was a darker pink, almost purple in areas. The dura stuck to it, and tiny rivulets of blood began streaming from the tumor’s raw surface as we stripped the dura away using a metal dissector.
“Cottonoids up, please.” The scrub nurse brought up a gleaming steel basin full of white cotton squares of various sizes. To each square was attached a long green string. These cottonoid patties stopped our suctions from plunging into the soft brain, like snowshoes which keep feet from sinking into snow. The strings allowed the patties to be identified and removed before the case ended.
Dr. Wilson encircled the tumor with half-inch patties, holding the cottonoids with a forceps in his right hand while using a suction tip in his left hand to push the cotton squares between the tumor and the normal brain. He began developing the “plane” between tumor and cerebellum. In benign tumors, a clear plane exists and the tumor can often be popped out using this encircling technique.
In malignant tumors, however, the cancer invades deeply into normal tissue, obscuring the plane between tumor and brain. Such was the case here. As we tried to separate the tumor away from the brain, the purplish lump disintegrated and the bleeding increased. A small piece of the friable mass was handed off to the circulating nurse in a small plastic cup for a “frozen section.” The pathologist would freeze the tumor and examine it under a microscope to assess malignancy.
The patties were now soaked with blood and the wound swam in the growing ooze. We aspirated the tumor with our suctions in the vain hope that removing it would slow the hemorrhage. Unfortunately, this maneuver only created a deeper hole from which the red blood continued to pour. I glanced at the heart monitor. Rebecca’s heart rate climbed steadily, a sign of her persistent blood loss.
The nurse-anesthetist called for the anesthesiologist to return to the room.
“Trouble?” Dr. Wilson asked.
“Her pressure’s dropping a bit.”
“Do we have blood in the room?”
“No.”
“Get some,” he said sternly while shoving a large ball of cotton wadding into the bleeding brain wound, “and start warming it.” The bleeding was getting ahead of us.
“Evoked potentials, two milliseconds out on the left,” chimed Bob. The hearing impulses from the left ear were taking longer to reach the upper brain regions, the first warning of brain injury.
The surgeon shook his head. “Shit.”
Although the large packing slowed the bleeding, the pressure on the brain stem was unacceptable. If we took out the packing Rebecca might bleed to death; leave it in and the brain stem might be damaged, causing permanent deafness or paralysis.
“Fuck the evoked potentials. I’m leaving this pack in for a while, until they get some blood into her,” Dr. Wilson whispered to me. Several minutes went by.
“Where’s my blood?” Dr. Wilson grew restless.
“Potentials out four milliseconds on the left and the waveform is flattening,” intoned Bob, a voice of doom in the corner, “and the right is now out one millisecond.” The brain stem cried to Bob’s computers, pleading for relief. Dr. Wilson sighed and pulled the cotton wadding from the hole. The bleeding resumed, but more slowly. I grasped the bipolar coagulator, a long forceps hooked to a battery pack which is used to coagulate small blood vessels with heat, and attacked those bleeding arteries I could identify in the soupy tumor bed.
The OR door swung open and a small, squat man dressed in white paper coveralls entered the room. The pathologist.
Dr. Wilson greeted him. “What do you have for me?”
“It’s pleomorphic, highly cellular, aggressive…a PNET, most likely.”
“Yeah, that’s what we thought.”
“Looks like you’re up to your ass in alligators!” The pathologist’s grin shone clearly from beneath his surgical mask as he glanced at the tangled mass of cottonoid strings spewing from the bloody cranial wound.
“It’s a wet son of a bitch, all right,” replied Dr. Wilson as he turned back to the wound, “but we’ll manage.”
“I’m sure you will, John,” the pathologist said over his shoulder as he headed for the door, “but cases like these remind me of why I only deal with dead people.”
We fell into a silent routine, sucking away bits of the tumor, stopping the bleeding, then removing more tumor. The gutted cerebellum collapsed upon itself. I held it away with thin copper “brain ribbons” as Dr. Wilson chased the tumor further and further into the depths of Rebecca’s head. Downward into disaster.
Rebecca had a cancerous brain tumor. The standard methods of dealing with cancer, radiation and chemotherapy, cannot be used in infants. Radiation therapy would destroy the developing brain cells and guarantee that Rebecca would be vegetative before she reached one year of age. The single weapon we could fire at this tumor was our surgery. Removing as much tumor as we could was her only, albeit slim and very risky, chance of meaningful survival. Rebecca became hypotensive and hypothermic, her heart flipped in and out of ventricular tachycardia (one step removed from full cardiac arrest), and yet we pressed on.
“Oh, damn!” Dr. Wilson finally exclaimed as he halted the tumor resection. I peered into the hole left vacant by the excised tumor. At the bottom, spinal fluid welled up and diaphonous strands of severed nerves floated in the watery pool like miniscule bits of white seaweed. He had gone completely through the cerebellum and into the space surrounding the brain stem, where vital cranial nerves exit on their way to the ears, face, and throat. Some of the nerves were destroyed, meaning that Rebecca might not hear, swallow, or breathe after surgery. The aggressive tumor resection was a gamble which we had lost.
“The left evoked potentials are out completely,” Bob said, his computers verifying the damage we could see with our eyes. The hearing nerve was transected on the left side.
Dr. Wilson put a cotton ball into the tumor bed and squinted at the CT scan hanging on a view box across the room, trying to compose himself. He was motionless for a long time. I have since come to know the agony of those minutes which follow hurting someone badly in the operating room. In those moments, the fear of confronting the family, the panicked thoughts of changing careers, visions of lawyers—all dance through the mind in a flash.
“Surgicel.” He finally stirred and called for the fine cellulose mesh used to fill the tumor bed. Done. Tumor remained in the cerebellum, but Wilson had lost his stomach for this case. With an incompletely resected PNET and several damaged cranial nerves, Rebecca was officially unsalvageable. Outside the OR, in a smoke-filled room, Rebecca’s parents and grandparents waited for good news that would never come. There would be no prom for Rebecca. We packed the brain with wads of surgicel and sutured the dura closed without speaking another word.
We took Rebecca to the recovery room still asleep and on a ventilator. She made a few decerebrate movements with her arms and confirmed our worst fear: we had damaged the stem. Decerebration, a rigid posture of the limbs, indicates a living, but dysfunctional, brain stem.
We called the family into a more private conference room, away from the crowded OR waiting area. I sat in a corner of the room as Dr. Wilson explained the situation to Rebecca’s parents and maternal grandparents. Unlike television, where people take bad news with explosive histrionics, such news in real life produces only a shocked silence. Families erect a shield of denial almost immediately.
“Rebecca has a deadly form of brain cancer called primitive neuroectodermal tumor,” the neurosurgeon calmly explained, “a name I know you won’t remember. Bottom line? It cannot be totally removed and we have no further treatments we can gi
ve her because she is a baby.”
“How does a baby get cancer?” asked her grandmother with an almost cynical tone.
“They’re born with it,” Dr. Wilson continued. “Cancer is not uncommon in infants and children.”
“Will she be a retard?” sobbed the mother. “Can she go to a normal school like other children?”
The grandparents shifted uncomfortably in their seats. Although uneducated, they grasped the reality of the situation far better than their daughter. Dr. Wilson leaned close to Mrs. Hobson’s face and placed his hand on her arm.
“Janet,” he said in a soft but firm tone as he gazed directly into her eyes and prepared to drop the bomb, “Rebecca is not going to school. Rebecca is not going to have a first birthday party. Rebecca is not leaving this hospital. Rebecca is going to die. Probably very soon.”
“No, no, you’re wrong, she’s a strong little girl. I know. She kicked like a mule in my stomach…” She started to cry harder and put her head down on the room’s circular conference table. “…She has such pretty blue eyes…Momma, tell me my little girl won’t die.”
Rebecca’s father sat in the corner opposite to me. He was hunched over, elbows on knees, smoke trailing from a cigarette in his left hand. He looked down at the floor and never spoke. The room fell into an eerie silence broken only by the occasional soft sobs of Rebecca’s mother.
“We’ll talk more later.” Dr. Wilson bolted up and started to exit the room, with me close behind. The grandfather followed us out the door while the grandmother stayed behind to comfort her daughter.
“Doc, can I talk with you?”
We closed the conference room door and moved out of earshot down the hall.
“How long does she have?”
“That’s difficult to say…a few months…,” replied Dr. Wilson. “She isn’t fully awake yet from surgery, but I’m afraid she may be badly hurt. There is a chance she might have some paralysis or that she might not wake up at all.”
“Can we take her home? This is such a long drive and the poor kids don’t even have their own car.”
“I don’t think she’ll ever be able to go home. We might transfer her to a hospital in your own state, but since she’s on medical assistance now and we began treating her here, they may not pay to take her back. Sounds cruel, I know, but she may be stuck here until she dies.”
The old man lowered his head to hide the tears welling in his eyes. “What should we do?”
“Janet may not have formed a truly strong attachment to her child yet. Your daughter is young, she has a lot of time to forget and have another child. My suggestion is that you go home. If you don’t come back, we’ll understand.”
“Don’t come back?”
“This baby has no future. Why watch her suffer and die? Go home.”
• • •
Rebecca eventually did awaken, but was virtually quadriplegic, with only weak movements of her arms and no movement in her legs. Her swallowing was impaired. She gagged and choked during feeding. Over the ensuing weeks, we inserted a tracheostomy in her neck, a permanent feeding tube into her stomach, and a shunt into her brain.
While Rebecca’s mother visited her occasionally, she could never hold her, never feed her. She couldn’t bear to watch as the nurses snaked thin tubes into her baby’s tracheostomy to suction away the infant formula overflowing into her lungs. Because the tracheostomy entered below the vocal cords, Rebecca could make no sounds. Her gaping mouth cried in ghostly silence.
Finally, the family heeded Dr. Wilson’s advice. One day Rebecca’s mother stopped coming. Rebecca became the ward of the fifth-floor neuro team. Nurses rotated frequently, to avoid feeling too motherly to the child with no future. Even Dr. Wilson quit making regular rounds on her. She was fed, bathed, and turned. She was given a radio and a ubiquitous Sesame Street mobile to be hung over her crib. Her life became a routine of detached custodial care. She was now adrift in the world, cut free of permanent human bonds, kept at arm’s length by those afraid to see children linger. Yet, for some strange reason, I still visited her every day.
Rebecca Hobson responded to the world that had greeted her with an immediate death sentence. She refused to die. At least for a good deal longer than anyone believed possible.
Months passed. Rebecca developed a round face, dimples, and a full head of curly hair. She smiled and made feeble swats at her mobile. Though she still could not swallow well enough to be free of the feeding tube, nor breathe well enough to be rid of the ventilator, she became a person. The scrawny infant that had frightened me in the ER grew to be a beautiful baby.
Rounds became playtime. I shook a rattle or her stuffed rabbit, the sole gift from her mother, as I listened to the litany of blood work and vital signs registered for the day. I harbored a nagging worry that Rebecca wasn’t going to die fast enough, that she was going to grow to be several years old and fully aware of the world before she had to leave it.
Ethicists and cost cutters argue that placing a pillow over her tracheostomy would be the best thing we could do for Rebecca—and for society. Rebecca’s hospital costs now topped half a million dollars, a steep price to pay for a baby with a terminal disease. Her death would be brutal, most likely from pneumonia. The ethicists and cost cutters might change their minds, however, if they saw Rebecca. Although imprisoned in a hospital bed, she did not look like she longed for death as she grinned at her rabbit.
Even after I left Children’s Hospital to return to the adult service, I would sneak back on my rare quiet nights on call to check on Rebecca. She lasted nine months, a year. She began mouthing words and spending time in a little swinging chair, rocking back and forth with blue plastic oxygen hoses swaying at her side. Her mobile grew faded and worn, her stuffed rabbit stained with pureed food. Her family, although informed of her progress, did not waver in their decision to treat her as already dead.
After my pediatrics rotation was over, I was assigned to the V.A. hospital for six months and lost track of Rebecca, who was now nearing eighteen months of age. One evening, as I was having dinner in the hospital cafeteria, I spied Eric, the current chief resident at Children’s. I asked him if Rebecca was still the same.
“No, she’s finally started to crump. We think her tumor is recurring.”
“Have you scanned her?”
“Why the hell would we do that? Are we going to operate on her again?”
He was right. This terminal slide was what we had all been waiting for since her first operation. Still, the news disappointed me.
I was going to head home, but I instead wandered down to the fifth floor to see Rebecca again. I hadn’t seen her for the past six months and was curious to see how she looked, what she could do.
It was evening when I arrived. The floor was quiet. I waved at some familiar faces at the nurses’ station and walked quietly down to Rebecca’s room at the far end of the hall. I stopped and looked in the window before entering the room.
The mobile was gone and the radio had been replaced by a television set with the volume turned down. The set flickered silent images of a MASH episode. The ventilator clicked and hissed a slow rhythm.
Rebecca blankly stared at the screen, her face paler and thinner than I remembered, her lids heavy. Dark circles underlined her sunken eyes, which were beginning to deviate downward again. The left corner of her mouth drooped from increasing facial paralysis, the dimples victim to her resurrected malignancy.
I stepped in front of the bed and peered down at the tiny face, which looked back at me. She paused, then broke into a crooked grin. Her eyes widened and she gleefully twisted her head and struggled to lift her paralyzed arms to embrace me, happy to see one of her few friends.
That moment remains clear and frozen in my mind to this day, more than any other moment in my clinical experience. Although in the years that followed I would take care of thousands of patients, marry, and have two daughters of my own, I may never be as important to anyone as I was to Rebecca that n
ight. As I had gone about my own life, I remained special to this pathetic child imprisoned in her hospital crib.
I spent a long time with Rebecca and her rabbit that night. Ten days later she died. The rabbit was buried with her.
The nurses called me to the neuro floor a month after Rebecca’s death. Her family had sent a gift to the floor and they wanted me to see it: a porcelain statue of a laughing girl. At the base of the figurine sat a small brass plaque, inscribed with the words “In memory of Rebecca.”
I am not particularly religious. In fact, the birth of children bearing cancers I find difficult to reconcile with a merciful God. Nevertheless, there must be someplace where Rebecca now laughs in the bright sunshine, finally free of her ventilator and gastrostomy.
My facade of surgical psychopathy cracking to pieces, I left the floor and walked away from Children’s Hospital.
Never to return.
11
Nightmares, Past and Future
The first years after receiving my driver’s license, I cruised the streets with little regard for the dangers of the road. Protected only by the rusting bodies of cheap used cars, I drove with the confidence of Achilles, afflicted with the youthful delusion of immortality. Until one event penetrated that delusion like the spear which pierced Achilles’ human heel.
My revelation came on a snowy Friday evening. I was piloting a 1967 Volkswagen along the expressway leading from the university to my parents’ home. Blowing powder barely dusted the roadway, and I believed the traction was normal. That is, until I reached the first overpass and discovered for myself that bridges really do freeze before the road surface. I hit the shimmering ice on the overpass going fifty miles an hour. I felt the friction between my worn tires and the glazed road evaporate; the steering wheel became limp in my hands. The car’s tail began a slow, clockwise spin; I saw the bridge rails flash by through my windshield as my vehicle turned perpendicular to the road.
When the Air Hits Your Brain: Tales from Neurosurgery Page 18