What’s In a Name

What’s in a Name

In the neonatal intensive care unit, bad baby names achieve an almost mythological status. The stories are told and retold, like an oral history of unfortunate choices. My favorites? Twin girls named Velvet and Velveta (pronounced like the cheese). Muchanka. More twins: Heineken and Lowenbrau (Mom: “I like them beers. And I was drinking them when they was conceived.”)

Whenever the subject of bad baby names comes up, I lead with “Gus Stone.” His name was spelled just like that on the birth certificate, and on his isolette’s name tag. Two words, capital “G”, capital “S”. Every new staffer who passed his bed would ask, “Why do we have a first and last name?” (For confidentiality reasons, we only posted first names on the babies’ isolettes.) We would explain, “It’s first and middle, not first and last. His mom pronounces it like Gustave—‘GooSTAAAV.’ She’s fourteen, she thought that’s how you spell it. Don’t laugh.” And then we’d all laugh in spite of ourselves. We called him Gus Stone for his entire year-long stay in the NICU.

Gus Stone had been wounded in utero during a drug deal gone bad. His mother was hit in the abdomen by an errant gunshot meant for her boyfriend. So Gus Stone was delivered prematurely, all of about 600 grams, which means he began life the size of a large frog. He had the cards stacked against him from the beginning— born with a gunshot wound, hepatitis, and a crack addiction.

And we loved him.

To survive working in neonatal and pediatric intensive care, nurses develop a professional detachment while remaining caring. It is a difficult task to cultivate this disconnect between where the patient ends and “you” begins. At the beginning of a NICU career it is more difficult to maintain balance, but by the time you reach your professional stride, if you last, only a very few patients “get to you.” Gus Stone got to us. And he got to Annie the most.

Annie was a hard-bitten lifer in the NICU. She’d been working as an RN since she was twenty, and was now in her late thirties. She’d seen it all, she’d tell you, as she sat on the patio of the staff lounge, smoking her ever-present Camel cigarette and downing black coffee. She had been the nurse in the delivery room with me when Gus Stone was born. The high-risk delivery resuscitation team was called to the OR, stat, when Gus Stone’s mom was rushed in by the paramedics, so Annie, Leah the neonatologist, and I raced to the operating suite and hurriedly scrubbed and gowned. The obstetricians prepared for an emergency C-section, splashing orange betadine on the distended brown belly protruding from hastily draped blue surgical towels. With surgical precision, and a measure of savage intensity due to the urgency of getting the baby out NOW, they sliced a low cut across the bikini line, retracted the layers of skin, then slit the uterine Stone. Gloved hands slid into the dark, open wound and pulled Gus Stone from the only warm and cozy home he would ever know.

The surgeons continued to work on mom as Gus Stone’s tiny grey body was carried over to us, and laid lifeless on the table. With practiced choreography we received him with the professional air of those who know exactly what tasks have to be done, and performed the standard high risk delivery recovery. We gently dried him, throwing the bloody, wet towels on the grey linoleum floor as we grabbed new warm ones to keep his body temperature stable. We slipped an endotracheal tube the size of a juice box straw into his windpipe, attached the black rubber football size ambu-bag to the end of the ET tube to squeeze oxygenated air into his lungs, placed EKG leads on his chest, inserted an IV to give meds, and started an arterial line to draw blood. The bullet had grazed his left buttocks. We were shocked it didn’t do more damage considering the tiny target. Annie started cleaning the wound with a 4×4 gauze pad that completely covered his lower body. She dropped it onto the floor, opened a 2×2 instead, and said, “God. They really need to make 1×1’s for us.”

In spite of the long odds, due to the miracle of technology, advanced medical care, and Gus Stone’s fighting spirit, we were able to resuscitate him. As the baby grimaced and started waving his tiny limbs, we breathed a collective sigh of relief. He was surprisingly strong and intense for such a small neonate, like a little coiled spring, or a cat when all its muscles are contracted right before it pounces. It was then, as we were able to relax after the initial resuscitation and take stock of the situation, that his unlikely shock of wild, curly black hair first made us laugh. As Annie was laughing and straightening an electrode lead, her hand brushed his, and his tiny fingers grasped her pinky and held it. His hand was so small it just encircled her nail and first knuckle; his miniature fingernails were perfectly formed. I watched Annie looking at his hand clasping her finger and knew—“Uh oh, this one got to her…”

Annie and Leah, gowned in blue and gliding like angels, wheeled the enclosed plastic isolette holding Gus Stone quickly through the quiet night of the hospital to the NICU. I had opened the front left round portal to slip a hand in to hold the ambu bag for the quick trans-hospital run, and was squeezing rapid breaths. I braced myself around corners with another hand on top of the warm, clear box.

An empty bay was waiting for us in Room 6, in the far corner, by the window. I set up the ventilator to impossibly high pressures for such a little body, took a sample of too-dark blood from his arterial line to test for oxygenation, and made mental calculations as to how many days he would survive. I never suspected that this would be Gus Stone’s home for the next year—and Annie’s.

I got to the hospital early the next morning. Instead of heading to the staff lounge to read, as I would normally do, I scrubbed and changed into the purple NICU scrubs and made my way back to Room 6. Annie was already there. “Annie! It’s 5 AM! Did you sleep here?” I asked. A guilty look met my eyes as she said, “He coded. They were short-staffed. I just pulled a double. No biggie.” I knew better. This was definitely “a biggie.”

As we spoke, the alarms started squawking and I looked up to see the white, craggy line on the EKG monitor, previously a regular rapid rhythmic pattern, begin to jump to an erratic beat and then slow: 140, 132, 120, 98… The oxygen saturation numbers fell as well, dangerously low. I grabbed the ambu bag, and started giving him more oxygen, more rapidly, at higher pressures. Annie opened the bright red code cart

and grabbed a syringe. “Call a doctor!” she called to a nurse across the room, as the sunrise streamed in through the window.

When Gus Stone was about two months old, he developed a serious intraventricular hemorrhage–blood had leaked into the ventricles of the brain and into the brain itself. IVH is a common complication for severely premature infants. We knew all along that it wasn’t likely that Gus Stone would survive, and we knew it was even less likely that he would survive without neurological compromise. He was almost guaranteed to suffer a host of standard complications that attend severe prematurity: cerebral palsy, infant respiratory distress syndrome, severe chronic lung disease, retinal damage due to oxygenation fluctuations, and hospital-acquired infections. But the words “Grade 4 IVH” still hit Annie hard.

As we waited for Gus Stone to come out of the shunt procedure in the OR, Annie and I talked about his life in the NICU. Gus Stone had been effectively abandoned, and had become a ward of the court. The agencies in charge of his destiny defaulted by policy to “all measures” so a course of palliative care only was out of the question. Whether we agreed or not, Gus Stone was ours to hold through the continued fight for his life and to comfort through his pain.

Even if Gus Stone did not thrive, he did continue to grow. Eventually, he outgrew his isolette. Babies born with severe health problems, if they survive, are usually “graduated” from NICU to Pediatrics in a natural progression. They’re discharged from the hospital, have a subsequent health crisis, are brought into the ER, and are then admitted to PICU. Gus Stone survived, but he was never discharged because he was

never well enough. We sent for a crib from Pediatrics. So there in the corner of Room 6, surrounded by frog-sized neonates in plastic isolettes, Gus Stone achieved his first year milestones under the sterile glow of fluorescent lights of the intensive care unit. His world was punctuated by the sounds of incessant beeping alarms and overhead pages, and colored by mobiles hanging from his crib sides and toys lining the window sill.

Gus Stone loved to be held and talked to. Many very premature babies with long term health problems and poor prognoses cannot tolerate touch. When they experience any stimuli, their blood oxygenation saturation falls, their heart rates rise or crash, and they “crump” to use a common non-scientific NICU term for a baby taking a turn for the worse. Nursing staff ensconce these neonates in dark corners and try to recreate the womb with minimal touch, lambskin bedding, blindfolds, and reduced noise.

Gus Stone could not have been more different. One of the unit rocking chairs made its permanent way to his bedside, and Annie could often be found rocking “her baby” and cooing to him. It was always a thrill-ride adventure juggling Gus Stone and all his IVs, EKG leads, multiple lines, and ventilator tubing as we carefully lifted him out of his bed and handed him to Annie in the rocking chair for “cuddle time.” He looked as if he were part of the Borg with all the wires and tubes. The alarms invariably went nuts as everything was transferred, usually due merely to the technology being disconnected and then reconnected. But sometimes the ruckus was real. Gus Stone had developed epilepsy after his IVH, and we had to make a U-turn and put him right back into the crib to resuscitate him if his seizures were severe.

When Gus Stone was nine months old, he was finally strong enough and he learned how to stand. He’d deftly navigate his wires and tubes, hold onto the rails, and pull himself up. He could also yell. Annie was in the blood gas lab running a sample during this stage, and a respiratory therapist popped his head in the door and said, “Your little boy is hollering ‘Bring me my damn bottle, Annie!’” We guffawed. Although Gus Stone never learned words, we knew exactly what he meant. Room 6 became a happy little haven in the NICU.

Mom never visited, Dad was unknown. But Annie remained a stable feature. This wasn’t hard-bitten Annie BFW (before Gus Stone) with her sarcastic comments and the sardonic smirk. She had transformed into a sunny presence, her bright-red lipstick lips turned up into a happy permanent smile as she cooed and read to Gus Stone in between taking his vitals, administering medications, and performing the inevitable repeated code blues when he crashed.

And crash he did. Often.

One early morning just before his year birthday, on the way to the unit from the cafeteria, I heard the faceless woman on the overhead page intone, “Code blue, cardiac cath lab. Code blue, cardiac cath lab.” I thought no more of it until later when I watched the NICU doors crash open and a peds bed being rushed down the hall by doctors, respiratory therapists, and Annie. I caught a glimpse of Gus Stone as the bed passed by me. Something was odd. I followed into Room 6 to see if Annie needed help. I looked closely at Gus Stone—something was off. That was it, I finally realized, he had red lipstick all over his mouth and nose. I looked at Annie, flummoxed.

“There was no ambu bag in the cath lab! And the valve stuck on the one in the bed!” she said, with a furrowed brow, raising her shoulders and giving an exasperated shrug. “You gave MOUTH TO MOUTH?” I asked. In the hospital, resuscitation is always performed behind multiple shields of protection, especially for patients with known contagions and dicey histories. “You know you’re going to have to get tested for everything for the next ten years…”  Annie shrugged again.

“Hey little boy! You gave us quite a scare!” she chirped as Gus Stone awoke and made eye contact with her. He looked so small in the big crib, and something was different. A little bit of the life force and vital energy that had always radiated from his wiry body seemed to have leaked out and drained away. The grey pallor under his skin matched the cold, grey light of dawn filtering in from the window. Her smile stayed, but Annie’s eyes clouded as she sighed, “Oh, Gus Stone, Gus Stone. What are we going to do with you?”

The Lipstick Code (as it came to be known) marked the beginning of the end. In the days before Gus Stone left this world, Annie gradually disconnected. Sardonic, sarcastic Annie returned, with a heartbreaking edge of deep sadness. Gus Stone coded more and more, and every time we resuscitated him, there was less of “him” behind his eyes when he recovered. Finally he was just a shell of himself in a broken little body, and one day he went flat line and we couldn’t bring him back. Leah, the neonatologist with the beautiful face and even sweeter voice who had been the one on the team when Gus Stone was delivered, looked at Annie as she said softly, “OK, I’m calling the code. Everybody? Code called. Time of death, 9:54am.” The resident stopped chest compressions, and I unhooked the ambu bag. Although his body remained, Gus Stone was gone.

Annie disappeared into the stairwell off the main unit hallway. We saw her collapse on a step before the heavy door swung closed. We pretended not to hear her sobs. She returned to prepare the body for the coroner, disconnecting the EKG leads and dabbing away the blood that had leaked from a hurried A-line draw. Every so often she’d raise her arm and use the short sleeve of her purple scrubs to wipe away her tears, leaving a dark wet stain. Someone drew the thin blue curtain around the bay, as we left Annie alone with Gus Stone to say good bye.

References

Boss, Rene: Journal of Palliative Medicine 2008 ; Volume 11, Number 1 Bradley D: Perspectives on newborn abandonment. Pediatric Emergency Care

2003;19:108–111

Marshall, Richard E. M.D. and Christine Casman. (1980) Pediatrics Vol. 65 No. 6 June pp.

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Haward, Marlyse, Nancy W. Kirshenbaum, Deborah E. Campbell, Care at the Edge of Viability: Medical and Ethical Issues, Clinics in Perinatology, Volume 38, Issue 3, September 2011, Pages 471-492

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Rijken, Monique, Sylvia Veen, Frans J Walther, Ethics of maintaining extremely preterm infants, Paediatrics and Child Health, Volume 17, Issue 2, February 2007, Pages 58-63

Richardson, Gale, Sara Hamel, Lidush Goldschumidt, and Nancy Day: Growth of Infants Prenatally Exposed to Cocaine/Crack: Comparison of a Prenatal Care and a No Prenatal Care Sample. Pediatrics, Vol 104, No. 2, August 1999

Rushing,Susan, Laura R. Ment, Preterm birth: A cost benefit analysis, Seminars in Perinatology, Volume 28, Issue 6, December 2004, Pages 444-450

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