How Doctors Think (15 page)

Over the next twenty-four hours, the pneumonia moved through Shira's lungs like fire through dry brush. Her thin chest, not much bigger than the width of Rachel's open hand, heaved desperately in the quest for more air. "We can't sustain her oxygen with the nasal prongs," the resident told Rachel. "We need to put her on a respirator. You probably want to leave the room when we place the tube down her trachea."

Rachel looked plaintively at the young doctor. She knew that she could not leave her daughter's side even for a moment. Whatever needed to be done, no matter how harrowing, she wanted to be there. Rachel explained this to the resident. He nodded kindly and said he understood.

Rachel stepped aside as the ICU team began to work on Shira. A nurse firmly held the baby's shoulders while another braced her legs. The resident tilted up her chin and deftly inserted a metal instrument to depress her tongue and illuminate the back of her throat. "I can see the cords," he said. The tube had to be passed beyond the vocal cords into the trachea. A few millimeters off this trajectory and the tube would go into the esophagus, blocking the infant's airway. It took several attempts until the tube was correctly placed. Rachel felt as if a fist were clenched around her heart, and with each try, it tightened. She fought to maintain her composure.

Normally, the air we breathe is 20 percent oxygen and the remainder largely nitrogen with a small amount of carbon dioxide. Our lungs are built like a honeycomb, and the sacs in this honeycomb are called alveoli. The oxygen we inhale passes through the thin wall of these alveoli into the bloodstream. When bacteria and mucus fill the lungs, as in pneumonia, it is difficult for oxygen to pass through the clogged sacs and into the blood. Without oxygen, of course, we cannot live. At reduced oxygen levels, tissues struggle to perform their functions. Over time, some of the oxygen-starved tissues weaken and die. This can have debilitating complications—like heart or brain damage. Preventing tissue loss and organ damage in cases like Shira's would seem simple: set the respirator to deliver pure oxygen through the tube and literally push the gas under pressure through the muck in the lungs. But this approach has limits. Raising the concentrations of oxygen to high levels is toxic to the alveoli, worsening inflammation and risking permanent scarring of the delicate tissue. And high pressure exerted to force the oxygen through the clogged alveoli can rupture them, causing the lungs to collapse. Still, there is little choice in cases like Shira's. The risks of high pressure and high concentrations of delivered oxygen have to be taken.

Throughout the day, the ICU team set and reset the respirator, delivering 60 percent, 70 percent, 80 percent, and then 90 percent oxygen. Simultaneously, the team dialed up the pressure to force the gas through. Finally, in desperation, Shira was given 100 percent oxygen at maximum pressure.

Still, not enough oxygen was reaching her bloodstream. A repeat chest x-ray showed that the "ground glass" was more opaque, meaning the infection was spreading. Bactrim was added to the initial set of antibiotic and antifungal agents. The resident explained to Rachel that Bactrim was the best treatment for Pneumocystis pneumonia. The examination of sputum and the chest x-ray picture were consistent with it. The disease is common in AIDS patients: AIDS was very prevalent in Southeast Asia.

Shira had been tested for HIV in Vietnam. The authorities assured Rachel the test had been negative. Could the unusual pace of the adoption—the rapid processing of the application, the call to appear in Vietnam soon thereafter, the permission to leave in days rather than a month—mean that the orphanage knew something was wrong with this baby? That her mother had AIDS?

Through her years in the business world, Rachel had learned to read people with a clear and discerning eye. Without that skill you were defeated in your deals. Someone was always ready to take advantage. Rachel didn't want to believe that was the case here. The gentleness and care with which the people at the orphanage handled each infant, the elaborate ceremony during which Shira and the other babies were "entrusted" as "treasures," did not suggest deceit. Perhaps, Rachel thought, the unusual efficiency and speed of the adoption were simply the work of a bureaucrat eager to clear a stack of papers off his desk during the steamy summer months. Or perhaps it was God trying to give this infant every possible chance to survive, knowing that Rachel would deliver her to one of the best pediatric hospitals on earth.

It was evening, and a somber quiet settled over the ICU. The oxygen level in Shira's blood was still low. "We'll try Hi-Fi," the ICU doctor told Rachel. Hi-Fi stood for high-frequency ventilation. Essentially, a machine would now push the oxygen into Shira's lungs at an even faster pace. It was the best any respirator could do.

Some hours later, Rachel left Shira's side to call her sister, the pediatrician. As she was talking, the ICU doctor walked over. His eyes were downcast. "It's not working," he said. "Even the Hi-Fi can't get her oxygen up."

Rachel relayed this news to her sister.

"She's critical," her sister said. Rachel's chest tightened.

"She's deteriorating quickly," the doctor said. "We may lose her."

Rachel acknowledged the reality but could not accept it. She believed with all her heart that God had meant for her to have a child, this child. Nothing that had happened had been regular. Yes, she had to admit, it
was
possible that the orphanage in Vietnam knew something was wrong with this baby, that the usual slow grinding of the bureaucracy had somehow flown like a welloiled wheel, propelling this new life into her arms. But even if true, it no longer mattered. Because now Rachel, the mother, had to do everything she could to stop death from wrenching her daughter away.

Rachel had not slept for days, had eaten little. She had been cast into the ocean of illness, a vortex of calamity sucking her down deeper and deeper. In Los Angeles it seemed to be simple sinusitis, then in the ER more serious dehydration, then pneumonia, then in the ICU the respirator, and now Hi-Fi. But the child's oxygen kept falling, and Rachel saw in her mind's eye a dead baby—if not dead, then functionally dead, so brain-damaged that she could not speak or see or hear, that she would be incapable of love.

Rachel called her family in Los Angeles for advice. With her sister's voice in one ear, the ICU doctor's in the other, bracketing the image of a lifeless Shira, she finally broke. Rachel started to shake. Her jaw clenched, her throat constricted, her breath came fast and short. Then her knees started to buckle.

God, help me.

Rachel struggled to hold on. The shaking intensified, and she felt she would shatter into a thousand pieces.

God, where are You?

Rachel knew what was happening. It had happened twice before, when a person she loved was lost to her. She had fallen apart, unable to function for weeks. Straining, she summoned fragments of Psalms, silently pressing her mind onto each phrase.

In distress ... I call ... unto You.

When ... my foot ... slips ... God supports me ...

But her tremors continued. They seemed to move out from her bones and explode through her skin. Rachel felt outside of her body, as if watching a film in which she was being blown apart. She focused all of her force on steadying her limbs and slowing her breath.

God, give me strength.

The young doctor was standing before her. "Are you okay?"

He gently took Rachel's hand and guided her to a chair. He held her arms as she slowly lowered herself into the seat. She raised her head. She looked at the young doctor with her own eyes, from within her body.

"I'm ... I'm ... okay."

"There is one last resort," the ICU doctor told Rachel. "ECMO."

Rachel's thoughts moved slowly. "What is ECMO?" she asked in a whisper.

ECMO, he explained, stands for extracorporeal membrane oxygenation. It is a process whereby Shira's blood would be freshened with oxygen outside her body—thus "extracorporeal"—via a specialized machine. First an incision would be made in her neck and a large catheter inserted to drain the blood out of her veins into the machine. Inside the apparatus, the blood is percolated over a broad porous membrane. Then oxygen is pumped up through the membrane into the blood. At the exit, a pump returns the oxygen-enriched blood to the body. In essence, ECMO acts like an artificial lung and heart.

Rachel strained to assimilate all this information. She asked the resident to repeat what he said. He did. Then he said there were risks and complications to the procedure. Clear in its purpose, el egant in its engineering, ECMO nonetheless has limitations. Inserting catheters into large vessels and passing blood through a machine opened the door to infections despite the best precautions. Infections seeded in the blood could be fatal. Moreover, the artificial membrane in the machine cannot be made perfectly smooth. Small clots could form on the membrane's imperfections. Pumped back into the patient, these tiny clots could clog the arteries, causing brain or heart or kidney damage. ECMO was a stopgap measure. A person could not stay alive on ECMO forever. Eventually, the lungs had to recover.

Rachel knew what had been left unsaid. If the lungs did not recover, the person was disconnected, and died. Rachel looked at the clock. It was nearly 11
P.M.
The resident handed her a consent form with Shira's name on the top. Rachel read the document. It reiterated what the resident had just said. She looked at his eyes. They said Shira was nearing the end.

A nurse readied Shira to be moved from the ICU to the ECMO suite. She disconnected the tube in Shira's mouth from the Hi-Fi respirator and immediately reconnected it to a large ambu bag that resembled a football. Pure oxygen flowed into the ambu bag at one end, and the nurse squeezed it by hand to move the oxygen out the other end into Shira's lungs. Two orderlies arrived to wheel the bed and the accompanying army of instruments—the intravenous lines with antibiotics and saline solution, the cardiac monitor charting the rate and rhythm of the heart, the oximeter displaying in large red digits the level of blood oxygen.

"What's going on?" the resident asked.

The nurse lifted her head as she kept pumping the ambu bag. Rachel looked nervously at the doctor. Now what was wrong?

"Look at the oximeter!" he exclaimed.

The nurse and Rachel simultaneously gazed at the neon readout of Shira's blood oxygen. The digits were increasing. Each squeeze of the ambu bag inched the number up, like a climber scaling a sheer cliff by dint of will.

"Put her back on the respirator," the resident told the nurse. "Let's give her another chance."

Rachel put her pen down, the consent form unsigned. She closed her eyes. A verse from Psalm 27 came into her mind.

Hope in God.

Strength and courage will be in your heart ...

Shira was reattached to the Hi-Fi. Rachel stood for a long time at the bedside, hypnotized by the metronomic back-and-forth of the machine. Her child had gone to the very edge of existence. And then a bridge, in the form of an ambu bag, squeezed by a nurse's hand, had unexpectedly led her back.

Rachel realized then what all doctors and nurses should know, that every clinical event has a core of uncertainty. No outcome is ever completely predictable. Rachel prayed for the courage to engage that uncertainty. She would learn everything possible about Shira's case, and, respectfully, question each and every assumption about the diagnosis and treatment. It wasn't because Rachel didn't appreciate the skill and devotion of the doctors or the hospital; this was an extraordinary ICU team in an extraordinary institution. It was because God did not make people omniscient.

Rachel Stein lived near the synagogue I attended, and came there to pray on Saturdays when she didn't make the long walk to her regular congregation. We spoke occasionally, and I knew she was in the process of adoption. That mid-August Sabbath in synagogue, after the service concluded, I heard that her child was in the ICU. I decided to visit the first chance I could.

Children's Hospital is a short three blocks from my lab, surrounded by a warren of towering research buildings. It was a stifling afternoon, and the heat radiated from the concrete in waves. I took the large lumbering elevator to the pediatric ICU, introduced myself to the head nurse, and asked for Rachel Stein. "She's with the doctors. They're in the middle of a procedure on her child. I'll tell Ms. Stein you're here."

I surveyed the ICU, the focused faces of doctors and nurses. I had a special admiration for them. In medical school my pediatrics course was divided between a morning outpatient clinic and afternoon rounds in the inpatient ward. In the morning clinic, I saw scores of children with ear infections, strep throats, eczema, and other common problems. It was fun to amuse the kids and talk with the parents while remedying these minor ailments. But the ward was a different matter. At the end of each afternoon, after attending to the ward's children with terrible diseases—deformed hearts that hardly pumped, cystic fibrosis crippling lungs and intestines, tumors that grew despite radiation and chemotherapy—I returned to my dorm room sick with despair. I did not have the emotional reserve to witness and absorb the suffering of these children or to comfort their anguished parents. I had found my limits as a doctor. Since that time, I have viewed those who care for children with a special respect and awe.

"I'm sorry to keep you waiting," Rachel said. Her face was a mask of worry, her eyes puffy, the lines in her brow deeply drawn.

It was no problem, I replied, and took her hand in mine.

Rachel explained she had insisted on knowing every detail of Shira's condition, so the ICU doctors and nurses invited her to make rounds with them, sharing what they knew and what they didn't. Pediatricians, as Victoria McEvoy emphasized, try to partner with parents, and Rachel said she was made to feel she wasn't a burden. After rounds, Rachel went on the Internet or called her sister the pediatrician to pursue further the particular issues the doctors and nurses discussed. But at the end of each day, an unanswered question loomed over the doctors and Rachel: Why was Shira's immune system so weak that it could not prevent Pneumocystis, a life-threatening pneumonia?