Declaration: What I learned from a millionaire mother, a NICU baby and a 3-year-old with Ebola

Ebola, Narrative Medicine

The corner of the washcloth still had its factory edge, bound and machine stitched.  It was one of a kind in a place where we made one-time-use “washcloths” by ripping squares of discarded fabric.  One use and often one wipe.  Based on how thread-worn and soiled the fabric was, we determined if we could risk a second wipe before throwing it onto the piles of vomit, blood and stool on the floor.

This washcloth was unique, however. It must have come from some box of donations from another place, a church group or wealthy family wanting to support the response.

The salmon pink corner matched the Salimatu’s* lateral commissure, her lips far more pale than the bleached rag.  Both used to be pink.  I had soaked it in water, not purified water, but water that ran inconsistently from the tap out front.  I wrung it dry a few times to make sure there was no bleach left.  I could not discern by smell alone whether any of the toxic liquid bonded with the cloths warps and wefts.  Everything smelled like bleach until all scent merged into nothing but hot air from the breath behind our N-95 masks.  Our olfactory nerves saturated within minutes of entering the Ebola Treatment Unit (ETU); after our sense of smell was gone, the only reminder that bleach pervaded the air was the collective chronic cough that most healthcare providers in the ETU developed.  Then only our hands and eyes could smell the death, the suffering and the pervasive, disturbing hopelessness.

Salimatu, for all intents and purposes, was dead.  She had died, or should have died two days prior.  She should have died from Ebola, but somehow this three-year-old, whose chances of survival were two out of ten, cleared detectable virus from her bloodstream. Sadly, the day after her seronegative blood was drawn, she suffered status epilepticus—intractable seizures.  For hours she convulsed intermittently and though we administered dose after dose of diazepam, it seemed that we could not quell the neurological storm.  Eventually she stopped seizing and ironically it was not death that quelled her neurological storm. She breathed and had a heartbeat, but she did not move.

She laid there for 24 hours on a plastic wrapped mattress upon a cracked concrete floor.  Her lungs were haunted with the sound of a rattle, an ominous sound, as if the ghost of a child who died in infancy was tantalizing now insomniac parents trying to sleep in the room next to a prematurely empty nursery.  She had inhaled vomit while seizing, aspiration pneumonia was taking its course.  That too should have killed her.

At the end of the morning shift, 90 minutes in the ETU, and two days after her seizures commenced, my facemask was fogged and muscles twitched from hypoglycemia.  There were no more IVs to start or medications to give on the pediatric team and so, in my last few minutes before doffing my protective gear, I kneeled next to Salimatu to clean her.  Her pale skin had a pristine glow.  The compassion this girl’s body received when we all expected her to die, the way staff members, all staff members—nurses, physicians, nutritionists, sprayers, cleaners and even members of the corpse team—cared for her by anointing her in Vaseline, rolling her body to prevent bed sores from forming, preparing her for when she stopped breathing, was some of the highest level of care I’ve ever witnessed. Her eyes remained closed without the hint of stress, her respirations, though with a cantankerous rattle, were consistent and slow.

I cleaned her hands with the water sopped cloth. Right hand, left hand, legs and feet.  I checked her diaper, which was dry and clean and I thought of the children that had gone on before Salimatu, who stopped urinating because of dehydration days before they died.  There was no tone in her muscles. She looked like a child’s toy wearing hand-me-down clothing.  I washed her face last.  Forehead, then ears, eyes, nose, inanimate in perfection.  Then her dry lips.  The corner of the washcloth draped the edge of her mouth.

Her lip twinged.

As if it were a hand, the corner of her mouth reached out to the transient angle of the washcloth sweeping gracefully across her face.  I thought I was hallucinating, so I wiped her face again to confirm.  Again, the vermillion border of her bottom lip contracted when the cool cloth touched down, this time with vigor.  This time she caught it.

Salimatu began to suck on the washcloth, declaring that she was not yet ready to die.  I soaked it with water time and time again.

Across the Atlantic Ocean in some Neonatal Intensive Care Unit (NICU) a new father washed his hands twice, a long meditation on soap and water.  He then, under the direction of his nurse, slid his naked fingers through a plastic portal to touch his child for the first time.   His daughter was born when she was 23 weeks and six days old according to a recent episode on the show, Radiolab.    His wife went into labor at 20 weeks and after nearly hemorrhaging to death, with the help of world class medical care she was able to keep the baby in her fragile womb for almost four more weeks.  When she was born, the child had a heart and lungs that pulsated rhythmically, appropriate and fast.

The child hardly moved there in the plastic box from the time of her birth.   Tubes supporting her breath, nutrition and hydration collectively carried more mass than this living creature.  A symphony of alarms, undulating respirators and monk-like parents leaning uncomfortably over individual isolation units filled his exhausted mind. I imagine him visualizing himself in The Matrix, when Keanu Reeves “wakes up” to rows upon rows of incubated humans being kept alive and afloat in pods of translucent fluid.

The nurse instructed the man how he could touch his child.

You cannot rub the child or her skin will come off. 

His heart raced, afraid of the new life before him and afraid of the new life in front of him, his wife and two grown sons. The pulse in his finger must have felt like it marched at the rate of his daughter’s heart, which in reality, would have been incompatible with life for him, necessary for her.

According to the podcast, she wrapped her fingers around the tip of his when he first touched her–the palmar surface of her premature extremity concave around the ridges of his fingerprint. His genes and hers—fear dissipated.  This soon-to-be million-dollar child declared that she was not going to die.

The Moro reflex, or infant grasp, is thought to originate somewhere between the lower pons and medulla.  Essential members of the brainstem, the pons Varolii and medulla oblongata relay messages of tactile stimulation to higher level processing centers of the brain, they maintain balance, breathing and swallowing.  An infants grasp is as autonomic as is the smile that arises when a baby farts—and yet, we, as humans find meaning in gestures that science has defined to be simply mammalian.  Grasping and sucking show us, in the newborn or neurologically devastated that there is some primal function of a developing or damaged brain.  This is the brain’s declaration of viability.

I work in a hospital in a wealthy neighborhood of one of the world’s wealthiest cities.  Every day at work, I encounter people who are afraid, angry, bitter and suffering.  When I met Salimatu while working with Ebola patients in West Africa, I also encountered people who were afraid, angry, bitter and suffering.  Though I have never met the NICU baby, Juniper, from Radiolab, I can say when I spent time in a NICU as a nursing student, we frequently met parents who were suffering.  In some intangible ways, this suffering is all the same.

My current employer offers extraordinary VIP services.  Celebrities, billionaires, donors, family of donors, friends of donors, friends of friends of donors come to us and somehow, after a chain of phone calls, rooms that were not available in an overcrowded emergency department or on a floor where other patients have been waiting hours for a bed, open.  The hospital I work for is a public hospital, thus it receives funding from the government to support the training of medical residents and to treat all patients that enter our facilities.  It does this and ever so disproportionately.  The rich receive consistent and world-class care.  The connected know a 5-Star reality that few others experience.  The community around the hospital knows this and has grown to accept this glaring incongruity.

As an emergency nurse, we greet all of our patients at the door and rapidly assess them determining: sick or not sick.  A woman came to us one day with a child who had had a fever the day before, had normal vital signs, was eating food and playing—not sick.  The family had always received “boutique-grade” medical care because of who they were, who they knew and the family into which they had been born. So she expected nonetheless.  Our department was not yet full, as it was early in the day and though the child did not need it (per isolation standards), we were able to give them a room in which to wait and be assessed by a physician.  I told the mother, however, that if we had a sick child arrive that needed a monitor, I might be forced to move them out of the room into a hallway space.  She ignored the comment as if I had not spoken or was not even in the room.

I need to see a doctor.

I reassured her that she would.

The day progressed and our department faced its routine inundation of more patients than bed space, a child arrived with a known neurological disorder, a shunt placed in his brain to drain fluids and the rapid onset of symptoms suggesting the possibility of a shunt malfunction.  This history and presentation of symptoms is alarming, marks the child as sick and usually is a one-way ticket to the pediatric intensive care unit.  A PICU patient medically and ethically, by all standards, merits a room with a monitor.  The only room with a monitor that was available in that moment was the room the non-sick child occupied.

For legal reasons and the sake of personal dignity, I could not explain details to the mother of the non-sick child why we would need to remove them from the room.  I did say something like:  We have a child in triage who will need a monitor for his care and because we are limited by space and your child does not need to be actively monitored, we ask that you move to this clean bed in the hallway.

And she retorted; she transformed into a lioness.  Her pale face reddened and sweat rapidly beaded at the dark roots of her blonde hair.  She stood within an inch of me the same way that bullies would get up in my face when I was a middle school student.  She did not shove me or punch me like they did, but she shook the same way and both hands clenched.

You… will… NOT…. move us. We are here to be seen by a doctor and we will not move.  YOU will make my child sick by putting him in the hall and he… will… not … get …. sick… because of your neglect.

We spoke more, she did not budge.  I calmly informed her that we did not purposefully put any patients at risk and that her child would be safe in the hallway.

At some point in all of our lives, we made a declaration to continue.  Unknowingly sometimes or reflexively even, we made a gesture that said, I am here in this moment and I am here to stay.  Our declarations of life, of love, of commitment to something unknown and greater than ourselves makes no logical sense.  Sucking a washcloth or squeezing a finger are extremely simple declarations that tell scientists, nurses and physicians that a child will survive despite all statistical odds, despite the science upon which we, as professionals rely.  This declaration invites hope along with suffering and pain.  It welcomes expense of money and energy, yet we have all made it and some of us have witnessed it declared by others. It is a violent declaration at times too but it comes from the same humanity.

The mother, like Salimatu, like Juniper made a declaration. One that sprung from a deeply rooted, evolutionary and cultural place.  Perceived survival first—reflexive and uncompromising.

And though I struggle with the abyss between the rich and poor in this country, the injustice that weakens the poor and caters to those made fragile by wealth and financial power, there is an innate beauty when we simply think we are trying to survive.  It is that beauty, based out of the core of our brains that makes our skin crawl and brows sweat, that makes the child dying of Ebola beg for formula to drink, that makes the neonate continue to breathe against all odds that makes us wholly, and collectively human.  As we all declare our place in this world, we too, all suffer.  And this mother who nearly throttled me, who I would like to thank some day for her ferocity if ever I meet her again, will never understand Salimatu’s struggle.  Salimatu, likewise, will never know hers.

Salimatu survived Ebola against the backdrop of seizures, pneumonia, malnutrition, profound poverty and social stigma.   Juniper spent more than six months in a NICU and lives, healthfully, today.  The mother who belittled me and my profession was able to stay in the room with her child; they were discharged to home after our physician deemed her son healthy.  We did give him some liquid ibuprofen to drink, half of which he regurgitated on himself and the floor.

From a neatly folded stack of hand-towels I found a cloth him with a cloth and wiped his face clean.  One wipe and then I dropped it into a blue plastic bag upon a pile of other soiled, bleached white towels.

 

*Salimatu is a pseudonym for 3-year-old patient who survived Ebola in respect her and her family’s privacy.

 

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