This was Lia’s sixteenth admission to MCMC. Everyone at the hospital—the emergency room nurses, the residents, the respiratory therapist, Neil—all assumed that Lia had the same thing wrong with her that she had had on her previous fifteen admissions, only worse. All the standard tests were run: blood counts, blood chemistries, blood pressures, and a chest X ray to confirm the placement of the breathing tube. Of course, Lia’s blood was tested to find out if her parents had been giving her the prescribed amount of Depakene. Like every test since Lia’s return home from foster care, it showed that they had. No one thought of taking her temperature, which was 101°, until after Neil had returned home. Two other unusual signs—diarrhea and a very low platelet count—were simply noted without comment on Lia’s chart, eclipsed into invisibility by the monumental scale of her seizures. No antibiotics were administered because no infection was suspected.
A twenty-minute bout of status epilepticus is considered life-threatening. Lia had seized continuously for nearly two hours. When she stopped, she was unconscious, though breathing. Because MCMC does not have a children’s Intensive Care Unit, it was obvious that Lia, like all of Merced’s critical pediatric cases, had to be transferred to Valley Children’s Hospital in Fresno. During the thick of the crisis, no one had said a word of explanation to Foua and Nao Kao, who had been forbidden to enter Emergency Room B. Steve Segerstrom’s Procedure Note for the saphenous cutdown tersely states, “Consent is implied due to severity of patient’s illness.” At some point, a nurse handed Foua the ruined clothes that had been cut off her daughter. After Lia’s vital signs were stable, Neil walked slowly out into the hall. He had sweat stains running from his armpits to his waist. Using the English-speaking nephew as an interpreter, he explained the situation to Foua. “I told her that this had been the big one,” he recalled later. “This was the worst seizure Lia had ever had, and it was very, very difficult to stop it, but we had stopped it. She was still very, very sick. I told the mother about the need to go to Fresno, because Lia would need stuff that Peggy and I couldn’t do. I also told her that we were leaving town but we would be back next week. And she understood that.” On Lia’s Progress Record, Neil scrawled, “Transport arranged for VCH ICU. Parents spoken to and understand critical condition.”
In fact, the parents understood an entirely different version of reality from the one Neil intended to convey. When I asked them why they thought Lia had been sent to Fresno, Nao Kao said, “Her doctor was going on vacation, so there wasn’t any doctor here, so they sent her away.” Foua said, “Lia’s doctor was good at taking care of Lia. Sometimes when she was very, very sick, we would take her to him and he would make her better in a couple of days and she would be bouncing around and walking around. But that time he went to play, so they had to send Lia to someone else.” In other words, the Lees believed their daughter was transferred not because of her critical condition but because of Neil’s vacation plans, and that if she had stayed at MCMC, he would have restored her to health, just as he had on every other occasion.
At 9:30, after he had arranged for an ambulance to take Lia to Fresno, instructed his staff on how to prepare her for transfer, and discussed her case by telephone with the Pediatric Intensive Care Unit at Valley Children’s, Neil drove home. He told Peggy, “That was it. She did it this time.” The two of them talked until almost midnight, retracing every moment of Lia’s crisis and each of Neil’s decisions. “I was so fired up,” he recalled, “I just couldn’t come down. When I’m like that I have trouble sleeping, and I start food-cramming—I just start stuffing stuff in my mouth. And I have to tell Peggy all about what happened.” Peggy was accustomed to talking Neil down from hospital emergencies, but she had never seen him this wound up.
“That night my feelings were mixed,” said Neil. “It had been just like my nightmares—that Lia would have the most terrible seizure of her life and it was going to be my fault because I couldn’t keep her from dying—but she hadn’t died, and with some real capable people helping, I stopped it and I took care of it and I was able to meet the challenge. So I felt a certain amount of satisfaction. But I also felt terrifically sad because I didn’t know what Lia was going to be like when she came out of this. I was pretty sure she wasn’t going to be the same.”
During the seventy-minute ambulance ride to Fresno, Lia “just crumped,” as Neil put it when he looked over her chart later. She arrived at Valley Children’s Hospital just before midnight in the throes of yet another grand mal seizure, with all four limbs flailing. Her fingers and toes were blue, her chest was mottled and cold, her blood pressure was precariously low, her white blood-cell count was precariously high, and her temperature was 104.9°. In a report sent to Neil Ernst, a critical care specialist named Maciej Kopacz noted that for an entire hour, it was impossible to start an arterial line “as no pulses could be palpable in any location.” Dr. Kopacz also commented that while he was performing a spinal tap (a procedure during which his nose was less than a foot from Lia’s buttocks), “the patient had explosive diarrhea showing large amount of water, foul smelling stools, with pus appearance.” It is hard to imagine a more difficult or unpleasant case than Lia’s must have been during her admission, which, to aggravate matters, took place during the early hours of Thanksgiving Day. Nonetheless, Dr. Kopacz, using the surreally courteous boilerplate of the standard consultation note, concluded his report—three single-spaced pages detailing one calamity after another—with the jolly sign-off, “Thank you very much for referring this patient to Pediatric Intensive Care Unit. Pediatric Critical Care Consultants will be happy to follow this patient.”
Happy or not, the team of critical care consultants—supported by an auxiliary force of neurologists, infectious disease specialists, pediatric residents, respiratory therapists, radiologists, technicians, nurses, and nurse’s aides—did indeed follow the patient. Their technology was cutting-edge and their clinical skills irreproachable. At first, however, they were too busy trying to save Lia’s life to focus on a great deal besides her pathology. Dr. Kopacz, for example, who worked on Lia for more than twelve hours straight, failed to notice her sex. “His metabolic acidosis was decreased after initial bolus of bicarbonate,” he wrote. “His peripheral perfusion improved and pulse oximetry started reading a value that correlated with saturation on the arterial blood samples.” Here was American medicine at its worst and its best: the patient was reduced from a girl to an analyzable collection of symptoms, and the physician, thereby able to husband his energies, succeeded in keeping her alive.
As soon as he saw Lia, Dr. Kopacz diagnosed her condition as “profound shock, probably of septic origin.” Septic shock, the result of a bacterial invasion of the circulatory system, is a systemic siege that overwhelms the entire body, first causing acute circulatory failure, and then, if the toxins are not disarmed and the blood is unable to deliver sufficient oxygen, triggering the failure of one organ after another. The lungs usually falter first, followed by the liver and the kidneys. The impaired perfusion of the tissues also bollixes up the gastrointestinal tract: Lia’s diarrhea was a typical symptom. Eventually the brain starts to die of oxygen deprivation, just as it would if the patient were drowning or being strangled. The mortality rate for septic shock is between forty and sixty percent.
There were so many things going wrong with Lia at once that a standard course of treatment, plotted with orderly deliberation, was out of the question. She required an immediate, unremitting, multi-pronged assault. First, as at MCMC, her seizures had to be stopped. Valium didn’t work. In desperation, Dr. Kopacz loaded her with thiopental—a barbiturate so potent that, in effect, she was put under general anesthesia. Lia quickly went from convulsive agitation to stunned immobility. From that point on, the word “epilepsy” is rarely mentioned in her hospital chart. The doctors had too much else to worry about. To resuscitate her, they placed her on a respirator that delivered one-hundred-percent oxygen, the maximum. To monitor her blood pressure and deliver drugs—her d
iarrhea made it impossible to give anything by mouth—they inserted two more intravenous catheters, one in her left femoral artery and one in her right femoral vein. To monitor her heart function, they threaded a Swan-Ganz catheter through two chambers of her heart into her pulmonary artery. After each of these highly aggressive interventions, Dr. Kopacz noted, “The patient tolerated the procedure well.” By this he did not mean that Lia didn’t complain (though this was true too, since she was unconscious throughout), simply that he encountered no technical problems and didn’t kill the patient.
At 11:00 a.m. on Thanksgiving, Lia crashed. As a result of her septic shock, she had developed a disorder called disseminated intravascular coagulation. The ability of her blood to clot had gone haywire, and she began to bleed and ooze both from her IV sites and internally. Her low platelet count at MCMC had been an early, unrecognized sign of this condition. Dr. Kopacz decided to try a desperate measure: a double volume exchange transfusion. Little by little, over a period of fifteen hours, her entire blood supply was removed and replaced twice with fresh blood whose ability to clot was unimpaired. The old blood went out the femoral artery; the new blood came in the femoral vein. Though her blood pressure plunged almost fatally during the first half hour, the transfusion finally worked. For the first time in thirty-eight hours, her lips, fingers, and toes were pink.
Of all the trials to which Lia’s body was subjected, the spinal tap—a routine and only moderately invasive attempt to find out if the sepsis had passed from her blood into her central nervous system—was the one that most distressed her father, who heard about it after it was performed. “The doctors put a hole in her back before we got to the hospital,” he said. “I don’t know why they did it. I wasn’t there yet and they didn’t give me any paper to sign. They just sucked her backbone like that and it makes me disappointed and sad because that is how Lia was lost.” In other words, Nao Kao attributed Lia’s deteriorating condition to the spinal tap, a procedure many Hmong believe to be potentially crippling both in this life and in future lives. Foua’s explanation was, “They just took her to the hospital and they didn’t fix her. She got very sick and I think it is because they gave her too much medicine.”
It was true that Lia was given a great deal of medicine. To prevent fluid from seeping out of her blood vessels, she was given Plasmanate. To raise her blood pressure and stimulate her heart, she was given dobutamine, dopamine, and epinephrine. To improve the circulation of her blood, she was given nitroprusside. To fight her infection, she was given a succession of antibiotics: ampicillin, chloramphenicol, gentamicin, nafcillin, ceftriaxone, clindamycin, tobramycin, and ceftazidime. To dry her oral secretions, she was given Robinul. To prevent seizures, she was given Ativan. (Her attending neurologist, Terry Hutchison, would have preferred Depakene, but it cannot be administered intravenously.) To nourish her, she was given Pedialyte and Osmolite through a nasogastric tube.
During Lia’s first week at Valley Children’s, she also underwent a series of diagnostic tests. To attempt to locate the infection that had precipitated her septic shock, she had an abdominal ultrasound and a Gallium scan, in which radioactive tracing material was injected into her bloodstream. The Gallium scan suggested that the culpable site might be her left leg, though this finding was not conclusive. To identify the infection, her blood was cultured. It tested positive for Pseudomonas aeruginosa, a devastating bacterium that favors immuno-suppressed patients, often in hospitals.
While all this was going on, Foua and Nao Kao lived in the waiting room of Valley Children’s Hospital, sleeping in chairs for nine consecutive nights. Relatives took care of their other children in Merced. The Lees didn’t understand why they were not permitted to stay by Lia’s bedside, as they always had at MCMC. Here, they were allowed only one ten-minute visit every hour: standard protocol for an Intensive Care Unit at the time. They had no money to pay for a motel room or buy food at the hospital cafeteria. “Our relatives in Merced brought us rice,” Nao Kao told me, “but only once a day, so we felt hungry.” During their brief periods with their daughter, they saw a plastic breathing tube sticking out of her throat, connected to a respirator; a feeding tube coming out of her nose; lines filled with clear fluids snaking into her arms and legs; plastic boards taped to her limbs to stabilize the intravenous lines; a blood pressure cuff on her arm that automatically inflated and deflated; electrodes on her chest, connected to wires that were in turn connected to a heart monitor next to her bed. The respirator hissed, the IV pump beeped, the blood pressure cuff crackled and sighed. Lia’s parents noticed that her buttocks were red and ulcerated from her diarrhea. Her hands and feet were swollen from fluid that had oozed from her capillaries into her tissues. The tip of her tongue was covered with blood clots because she had bitten it while she was seizing.
“I met with father in PICU [Pediatric Intensive Care Unit] waiting room, using VCH interpreter Yee,” wrote a hospital social worker early in Lia’s stay. “I am not certain how completely father understands the seriousness of his daughter’s critical condition because he is equating this hospitalization with past hospitalizations.” Valley Children’s Hospital was a much larger and richer institution than MCMC, and could afford not only to practice medicine on a grander scale but also to employ interpreters on some shifts. Nonetheless, the Lees remained baffled by most of what was happening. And though Valley Children’s was well known for its efforts to reach out to patients’ families, Foua and Nao Kao did not realize that their “counseling” sessions, which usually left them confused and angry, were intended to reduce their stress.
On Lia’s seventh day in Fresno, her doctors attempted to explain to Foua and Nao Kao that they wanted to perform two more invasive diagnostic tests: a bronchoscopy, to see if the infection had originated in her right lung, and a sinus wash, to see if it had originated in her sinuses. They also wanted to perform a tracheostomy, a hole cut through the neck into the windpipe, just below the larynx, to make it easier to ventilate her. “Parents counseled of Risks/Benefits/Alternatives thru interpreter,” noted one of her doctors. “Appear to understand and wish to proceed.” In fact, her parents had no idea what any of these procedures, which were scheduled for the following two days, entailed. They also did not understand why Lia was comatose. With a relative interpreting, Foua asked a nurse if the doctors had given Lia “sleeping shots.”
Later that same day, Lia’s doctors gave her a CT scan and an EEG to see how her brain had weathered its prolonged oxygen shortage. A neurologist had noted earlier that Lia had no gag reflex, no corneal reflexes, and “no response to deeply painful stimulations.” Those findings were ominous. The new tests were catastrophic. “CAT scan of the head…revealed marked cerebral edema with very poor differentiation between white and gray matter,” wrote one of the residents. “An EEG was obtained which revealed essentially no brain activity with very flat brain waves.” Lia was effectively brain-dead.
Jeanine Hilt, the Lees’ devoted social worker, got a call at 6:00 one evening informing her of Lia’s condition. She borrowed a Human Services Agency van and drove half a dozen Lee relatives to Fresno. “I don’t know who they were,” she recalled. “They just piled in. When we got down there, the doctors were preparing the family for Lia to die.” That night, writing in tiny, crabbed handwriting in her field notebook, she summarized Lia’s situation with heartsick concision: “Lia seizured 11/25/86. Transferred Valley Children’s. Massive septic blood. Transfusions. Diarrhea. Comatose. Brain Damage. Vegetable.”
Dee and Tom Korda, Lia’s former foster parents, also drove to Fresno. “It was awful,” Dee recalled. “The doctors wouldn’t even look at Foua and Nao Kao. They’d only look at us and Jeanine. They saw us as smart and white, and as far as they were concerned the Lees were neither.”
Between notations on turning, cleaning, and suctioning Lia, one of her critical care nurses recorded the following:
12/1/86. 1700. EEG was flat.
1800. Dr. Singh [an attending physician] speak
ing to family with son as interpreter in lounge. Family in to pt. room. Father called by mother. Very tearful.
2000. Family insisting on being @ bedside. Language barrier prohibits verbal communication but TLC given to mom.
2100. Father here with family interpreter asking questions.
2115. Family states “Wants medicine to fix Brain.”
The nurse tried to explain that there was no medicine that could fix Lia’s brain. The next morning at 3:00 a.m., she wrote, “Mom @ bedside very upset, crying & chanting.”
Foua was with Lia when one of Lia’s critical care physicians walked in and disconnected the intravenous lines. “The doctor seemed like she was a good doctor,” Foua told me, “but she wasn’t. She was really mean. She came in and she said that Lia was going to die and then she took out all the rubber stuff and she said that Lia’s brain is all rotted and she is going to die. So she wanted to take Lia’s medicine away from her and give it to someone else. At that moment I was so scared that it seemed like something was just going up and down my body and I thought I was going to die too.”
This doctor was merely following Terry Hutchison’s orders—to which he believed the family had agreed—to discontinue all life-sustaining measures so that Lia could die as naturally as possible. Dr. Hutchison also canceled the bronchoscopy, the sinus wash, and the tracheostomy. Finally, he made a decision that is recorded in the most startling sentence in Lia’s long, bleak Valley Children’s Hospital chart: “The patient was taken off anticonvulsives [following] the abnormal EEG.” Because there was no electrical activity in her cerebral cortex, nothing could cause her to seize anymore. The epilepsy that had governed Lia’s life since she was three months old was over.