They said he had weeks to live

My son Joshua was born too soon. But in the years that followed, he struggled to hold on. So did we


Debbi Harris
September 7, 2011 4:30AM (UTC)

I suppose I seemed a bit too self-assured, strolling into the Family Surgery Waiting room as though I owned the place. I knew to wear warm clothes and comfortable shoes; it was always so frigid in there, and my boy's surgeries seemed to take longer than most. I'd often venture into the gray-white hallways of the hospital, loitering like a familiar vagabond, hoping a doctor or favorite nurse would see me and feign interest in a grain of conversation. Bizarrely, this place had become one of my few social outlets.

While my husband, Victor, slept in one of the few comfortable chairs, I entertained myself by assessing the other families. The couple next to us was uninitiated. They sat close together, eyes dilated with fear, holding hands. Ear Tubes, I decided. First kid. Professionals. Scared as all get-out. I strained to remember when we were them. Mondays always brought out a lot of Ear Tubes. It was surgery day for the ENTs.

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The plus-size woman near the television had captured the only other cushy recliner in the room. She snapped open the morning paper and enjoyed a steaming Styrofoam cup of coveted Swiss Miss. She was alone, her only companion a child's empty wheelchair and a familiar array of pumps and tubes.

A Trach, I hardly needed to venture. She was one of us. The ENTs looked forward to the trached kids. The challenge shot a little adrenaline into their boring Ear Tube Mondays and reminded them why they had gone into medicine in the first place.

The Trach parents knew the hot chocolate was hidden in a bottom cabinet that looked like it was locked. They weren't shy about grabbing the best chairs or changing the channel on the outdated television. The Trachs laughed at the ladies on "The View," to the horror of the Ear Tubes, and chatted with the staff as though they were old friends.

The Trachs had given up their jobs because of poorly staffed home care nursing. They had had to drop their fitness club memberships, which showed in their tight, well-worn clothes. Sleepless nights dipped the corners of their eyes. They appeared to flaunt an air of superiority, but I knew it was simply the accumulation of too many harrowing days, mixed with the uncertainty of the future.

I'd entered this sterile world in much the same way as my premature son. Unexpected, harried and blanched with fear. A plastic oxygen dome was slapped onto my face, the brakes released like the pins of hand grenades on my hospital bed, and I was sprinted into a cold, blue operating room, where the baby I hadn't expected for another two months was torn from my womb amid too much blood, flying surgical instruments and otherworldly chaos.

Baby Boy Harris was born too soon. There was no time to name him. With two other boys at home, Victor and I thought, statistically, this one was sure to be a girl. Yet nothing is certain, after all, and names became inconsequential then.

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"Sarah Elizabeth," Victor had mumbled in confusion to the anesthesiologist's frantic request to name the baby before he died.

"No, Mr. Harris. That's not going to work. You need to think of a boy's name. Right away."

A career Marine, my otherwise stalwart spouse seemed strangely minimized in his helplessness. Victor's voice trailed to a stunned silence as he choked out once more, "Sarah. I don't know … Sarah Elizabeth.''

It took 104 harrowing days to get home from the hospital. There were tubes, infections, ostomies, oxygen, surgeries, scans, transfusions, crash codes and emergency end-of-life discussions that never resulted in the end of life. The neonatologist, the specialist attending to the tiniest and sickest babies, grew tired of keeping Josh alive. One Friday, she summoned Victor and me into the dreaded consultation room. We'd seen many families stumble in there, emerging bent over and weeping, the thin aura of hope sustaining them flushed from their faces.

Dr. X rushed in at an authoritative clip, followed by a whoosh of expensive perfume, her high heels clicking on the linoleum floor. She pushed a single sheet of paper toward us.

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"You need to sign this Do Not Resuscitate order now," she demanded. "I can't be bothered standing at your son's bedside, bagging him all weekend while I'm on call." We'd found out later that Josh's airway was weak, another among the many casualties of the devastating brain hemorrhage he'd experienced at his violent and premature birth. He needed a tracheostomy, but she believed it futile to offer it then.

My head fell as I wept. Victor's hand rose to halt the discussion. If our son were to die, we wanted it to be in the care of someone more compassionate.

"You do whatever you need to do to keep Josh alive then," Victor countered. "Until your shift is over." The doctor left abruptly, huffing. She refused to speak to us again, but Josh was alive the following Monday. After a while, we took him home.

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- - - - - - - - - -

Home was supposed to be a refuge from the desperation of the hospital. For 104 days, I daydreamed of wrapping myself in the unconditional love of family, and the carefree spirit of a proud mother. I would sit on the sofa, holding my baby in a soft blue blanket, free -- if only for a moment -- of the whirring pumps, lead wires and shrill alarms that announced his arrival. I would caress him, kiss his tiny head, and fluff his silky black hair. Become his mother. Our family would finally be together, alone, and happy for whatever time granted us by God and technology.

There is a whole category of us, however, for whom there is no such sanctuary. A virtual army of staff arrive at our doorsteps, ordered by concerned physicians and mandated by astute ethics committees, to help ensure the safety of our medically fragile children, who, instead of rattles, bottles and Crystal Gayle lullabies, survive by breathing through tiny tracheostomy tubes, eat, not at their mother's breasts, but through tubes inserted directly into their distended bellies, and are lulled to sleep by the F sharp of the accusatory alarms that warn of tenuous oxygen saturations and unreliable breaths. Nurses follow us through our homes, eavesdrop on private conversations, and track muddy shoe prints on newly scrubbed floors. They ask us to examine the color of respiratory secretions as we sit down to eat dinner and transport us into socially complex worlds for which there is no preparation.

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My particular introduction to the New World was Nurse Dennis.

Dennis met me at the hospital on what was to be the glorious day of discharge, for which I longed immensely. He took the baby from me and began to fix him into the infant car seat, whose size and heft seemed to laugh at its minuscule passenger. At almost three and a half months old, Josh was barely the size of a newborn. The tiny thing slumped over, his floppy chin occluding the miniature tracheostomy tube that carried air to and from his complicated, immature lungs.

At home, I recovered my infant from the nurse, snuggled into position on the sofa, anxious to get to discover his baby scent, apart from the alcohol and bleach of the hospital. I wanted to feel his tiny finger, and review the scars that bore witness to so many surgeries in three short months.

"I should take him now, really," Dennis said, bursting into my dream like a clap of angry thunder. He had plopped himself right next to me on the sofa, so close that his thigh was touching my skirt. His ridiculous Popeye arms reached forth and extracted the baby from my own. I hated everything about his presence.

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"He really needs to get back on the oxygen and the oximeter," he added. "If you have any questions, I'm here for a 12-hour shift. Get some rest." And then he left me to ponder my new role as ... I wasn't quite certain.

Dennis would continue to stomp upon boundaries. He'd follow me through the house reviewing snippets of his nursing report, appearing in the doorway of my bedroom as I dressed.

When I finally gathered myself to address this indiscretion, he replied, "I'm a nurse. You don't have anything I haven't seen."

After that, I found myself hiding in the walk-in closet, one hand planted firmly on the doorknob, the other furiously doing the work of two as I readied myself for each stolen day, the typical magic of motherhood erased by Dennis' feigned omniscience.

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Eventually, Nurse Dennis would disappear among the trail of licensed practical and registered nurses who became unwitting players in a remarkable game of endurance. Because this life was new to me, my role was unclear, an unexpected challenge.

"I'm not certain what my responsibility is while you're here," I said to one nurse as she sat regally in the rocking chair Victor and I had purchased when our firstborn arrived. "I'm used to being hands-on with my kids," I said, in an attempt to illicit some empathy for my misplaced longings.

"Let me tell you something," she asserted. "Inside this room, I'm in charge. Your territory is outside of that door." She got up then, pushing the nursery door closed and leaving me alone, angry but determined, in uncharted land.

But Nurse Shirley was different. I realized how much one afternoon when I was called away from work for an emergency with Josh. I had gone back to my job as a technical writer, reluctant to leave my vulnerable child only weeks after he had joined us at home. But it was the only way to keep the health insurance that sustained us all and paid the hundreds of thousands of dollars in hospitalization costs that had accumulated in just three short months. Victor worked as a systems consultant, without benefits, the burden of requiring me to provide healthcare coverage heavy on his heart, and even more so on mine. When I got the call at home, I fled back home, practically tumbling down the few stairs to the nursery, only to become a wary spectator. I took in the scene in horror.

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Three nurses sat on the couch, helpless and useless. But only Nurse Shirley stood, her hefty body in constant motion, the curls of her waist-length blond hair swaying in concert, as she worked vigorously to spare Joshua from succumbing to respiratory distress, a common and formidable threat in the early days. She juggled oxygen around a tiny Ambu bag, spinning suction catheters and pushing saline from vials to loosen defensive secretions, handling the child like a masterly magician. Focused. Resolute.

Nurse Shirley had arrived early that day, as always, anxious to get her report from the departing nurse. A preceptor nurse and her cohort were closing out the day shift and a new trainee had just arrived when Josh began to decline, much to their panic and confusion. He was struggling to catch his breath, sucking at the air around him ineffectively through the massive tube in his short neck, terror lighting his eyes. Nostrils flaring, our baby's lips had begun to blue from the effort. Josh's body retreated, calling on the axillary muscles below his fragile diaphragm to take over in a final effort to keep him alive.

After Nurse Shirley had stabilized him, one of the nurses approached Shirley. "So, was he supposed to be on oxygen all of the time?" she asked, inadvertently confessing to the negligence that had precipitated the event.

Nurse Shirley didn't miss a beat. "Only when he needs to breathe."

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Nurse Shirley's approach to me was more that of mother-to-mother than superior to subordinate. Careful not to overstep personal boundaries, she initially revealed little about her own life, other than that she and her husband lived on a hobby farm, they had four children, including a baby just six months older than Josh, and she was working hard at being a good Baptist.

It would be years before Shirley told me the details of her entry into our lives.

"The agency said I'd be here just a week," she said. "They oriented me over the phone. Said the client was just a trach and a g-tube, and that he'd live no longer than that." But as soon as she had seen his lively brown eyes and sensed he feisty spirit, she knew, as a mother, they were wrong.

Shirley went on to tell me about her own baby, who had died.

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"I wouldn't tell you when I first came. I didn't want you to think it would happen to you. My son, Carl, was born without a thymus gland – DiGeorge syndrome," she said. "He was full-term, but very sick. He had a trach, too, and a feeding tube. They sent us home with nursing care."

She's one of us, I thought.

"The nurse lasted a day. I sent her home and took care of Carl myself," she added. "He died in my arms on the way to the doctor when he was three and a half months old. But that's my story. It's not going to be yours."

We grew to be friends, willing riders on Josh's medical roller coaster. A former Marine, Shirley easily gained Victor's approval because of the loyalty inherent in the pledge of Semper Fi. Always faithful. We learned about Josh's complex conditions and cares together and, while she encouraged me to recapture my home, getting rid of questionable staff, I coaxed her to return to school, to trade in her LPN for an R.N., and command the respect of those she continued to outshine.

Eighteen years later, we find ourselves in the same place. Despite a two-year absence while Shirley delivered and nurtured twins, divorced her abusive husband, and embarked upon a life of single-parenting a brood of six, Josh remains in her care. As we travel with Joshua to clinics for treatments, exams and procedures, we find ourselves playfully jockeying for position.

"Which of you is the mother?" the medical assistants often ask us.

"I am," we reply simultaneously.

"She is," Nurse Shirley relents, "but I have partial custody." We laugh at our own joke, cracking up the staff. Josh smiles wide then, happy ... and alive.

- - - - - - - - - -

Back outside Family Surgery Waiting, I caught a glimpse of Dr. C gliding by. I wondered if he remembered me. His white coat floated behind him, like a superhero's cape, but he whisked past without acknowledgment, reaching for a door that said "No Admittance."

I couldn't stop the thoughts that trailed in his wake.

That night, Dr. C and his partners were at a holiday party. I knew something was wrong, so Victor drove me to the hospital. I couldn't feel the baby move. I'd never experienced such desperation. At home, I had squeezed Dippity-Do onto my belly and strained to hear the tiny hint of a heartbeat or a playful movement, pressing the plastic yellow microphone of a Playskool cassette player against my still insignificant baby bump. Nothing.

No one offered me a wheelchair when I walked up to the Emergency desk that day. The attendant was not interested in my plight. "I think I'm in labor. I don't know. Something's wrong," I had told him, but I didn't even look pregnant yet.

"Labor and Delivery is on 2. Take the elevator to your left." Then he returned to his reading. Later, when Dr. C's partner arrived, flushed with holiday revelry, he said they'd just wait to deliver the baby, even though the bi-level ultrasound showed the baby wasn't moving, and most of my amniotic fluid was gone. His head was enlarged and there appeared to be a piece of cord lying near his little neck.

"Wait until after the weekend," he said. "When more departments are open. I'm sure everything will be fine."

But, it wasn't fine.

The baby went into distress the next evening. Joshua was delivered by emergency C-section at 11:51 p.m. The insurance company counted those nine minutes as one of my three admission days and discharged me, as my baby fought for his life in the neonatal intensive care unit, the sickest child there. His brain had bled at delivery, probably from asphyxia, the cord dangling about his throat, cutting off his oxygen as he turned from a breeched position to get ready for birth.

"Whatever happened, it occurred within the past 24 hours," the neurologist had told us. His eyes set upon mine then, his countenance apologetic.

Later, the in-house administrator arrived at my bedside. "I'm sorry, you'll have to go," she said, acquiescing to the insurance company's directive. "You see, there were no complications." And she had turned on her heel and fled the room. I'm certain she didn't want me to see the tears welling in her eyes.

But despite how much fear and pain has taken place in these corridors, I have found a home here as we learned to navigate them. For better or worse, it is the life that we know.

Dr. M emerged, seemingly from nowhere, disrupting my memories and stirring Victor to attention.

"Josh did just fine. He's in Recovery," she says. "I think he'd love to see you now. He's already trying to open his eyes." She patted my shoulder with one hand, pulling off her blue surgical cap with the other. "It's always good to see you two."

Victor gathered our things and we stepped out into the hallway. "Is there a nurse tonight?" he asked.

"Yes. Shirley."

"Good." he said. "We'll get some rest."

And we headed down the gray-white hallway to find our boy. 


Debbi Harris

Debbi Harris is a Minnesotan, and former technical writer, who stays at home to care for her family, particularly son Joshua, who has complex medical needs and disabilities. Debbi volunteers in a number of capacities to advocate for children with special health care needs and their families. Debbi also writes creative nonfiction, fiction and poetry in her spare time.

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