The Spirit Catches You and You Fall Down

  13

  Code X

  The night the Lees told me about their postwar experiences, I remember saying, because I did not know what to say, “That must have been terrible.” And Foua gave me a brief, opaque look, and said, “Yes, it was very sad. But when we were running from Laos at least we hoped that our lives would be better. It was not as sad as after Lia went to Fresno and got sick.”

  At first I thought I had misunderstood her. In Laos, Foua and Nao Kao had lost three children in three years. They had dodged bullets, land mines, and walls of fire. They had left their village behind, and then their country, knowing they would never see them again. How could anything, even the catastrophic illness of their favorite child, be worse than that? But I had not misunderstood her. Violence, starvation, destitution, exile, and death were, however horrific, within the sphere of known, or at least conceivable, tragedies. What had happened to Lia was outside that sphere.

  After eleven days in the Pediatric Intensive Care Unit at Valley Children’s Hospital, Lia was transferred to MCMC by ambulance on December 5, 1986. She was examined by Dave Schneider, a second-year resident with a reputation for being brainy and nervous. In his examination note, Dave described Lia as “a comatose, overweight Laotian girl” whose admitting diagnoses were:

  Severe hypoxic brain damage.

  Pseudomonas septicemia.

  Severe seizure disorder.

  Status post disseminated intravascular coagulation.

  Status post septic shock.

  “I was on Peds rotation,” Dave recalled, “and when I heard Lia Lee was coming back from Fresno, basically brain-dead, my heart sank. I didn’t know the family very well, but I’d heard that they were noncompliant and difficult. Everyone had. I still have this vision of Lia when she got here, just lying in the bed and not looking anything like she used to. She was very hot and febrile, her eyes were partially rolled back into her head, and she was breathing irregularly and way too fast. She had a lot of mucus and junk in her throat, but it was almost impossible to suction her because her jaw muscles were clamped shut. She wasn’t making anything in the way of purposeful movements. Her legs were extended and her arms were alternating between being extended and flexed up to her chest, which is a sign of very weird and ominous stuff going on in the motor strip of the cerebral cortex. She did withdraw from painful stimuli, like when I squeezed tightly on her fingernail beds. Patients usually tell you to get the hell away when you do that. Lia couldn’t tell me to go to hell, though on some level I’m sure she wished I would.”

  Lia was admitted to the pediatric unit. “I remember the first time I went up to see her,” said Peggy Philp. “She was awful. Lia had been a real cute little kid—I mean, she had bad seizures, but she was so alive—and now, she was just…well, there. But not peaceful and asleep-looking, like you might expect with a coma. I mean, it would be one thing if she lay there like Sleeping Beauty, all pretty and comfortable, but she didn’t. She seemed to be in pain. She’d stiffen whenever you touched her. She was struggling. She made terrible, loud noises when she breathed”—Peggy demonstrated with a torturous rattling wheeze—“and I kept thinking, God, she can’t go on like this, this is exhausting her, she is going to wear herself out and die any minute. I remember being real angry at Hutch”—Terry Hutchison, Lia’s neurologist in Fresno—“you know, God, you sent me this?”

  When Peggy finished talking, I turned to Neil to ask what his impressions had been. He shifted uneasily in his chair. “Well, I didn’t see her right away. I knew she’d been transferred back to our care to die. There she was, and that was what I had been afraid of, and I was just so—I mean, that episode in the emergency room burnt me out, it emotionally drained me, and facing Lia was real difficult for me at that point.”

  “So I took care of her,” interjected Peggy.

  “You did. I mean, you probably took care of her almost exclusively. I probably chose to avoid it a little bit. More than a little bit. I chose to avoid it. I have to admit, I bailed out.”

  It took Neil three days, walking past Lia’s room innumerable times, before he could bring himself to look at the patient who had dominated his professional life and his private thoughts for much of four years. I asked him what he found when he finally saw her.

  “She was in a vegetative state. But that was one angry vegetable.”

  Calling Lia a vegetable was, it seemed to me, just one more form of avoidance. In describing what had happened to her, he and Peggy both used the kinds of terms favored by the doctors in MASH, gallows-humor slang wielded in times of extreme stress on the theory that if you laugh at something it can’t break your heart. “Lia got gorked.” “She crumped.” “She fried her brain.” “She vegged out.” “She crapped out.” “She went to hell.” “No one’s at home, the lights are out.”

  The first Nurse’s Note after Lia’s admission read: “Pulse rate fast at 130 & has a temp of 102°. Offers no recognition or acknowledgment. N/G tube in place.” Then, without comment: “Family in room and Shaman performing a ceremony.”

  When I asked Gloria Rodriguez, Lia’s nurse during that shift, about that note, she said, “Oh yeah, they had a medicine man come in. He brought some kind of white ointment, and they chanted and rubbed it all over Lia. It smelled like vodka and herbs. I remember her mom wouldn’t let us give her a bath because that would take off the white stuff.”

  In any case, Foua preferred to care for her daughter herself. She sat by Lia’s bed around the clock. “Mother encouraged to hold child while linens changed,” noted a nurse. “Mother stroking & chanting to child.” The nurses showed her how to apply Vaseline to Lia’s cracked lips, rub Desitin on her diaper rash, cool her forehead with a moist washcloth, suction her secretions, and feed her formula through a nasogastric tube. Once, Foua and Nao Kao brought in an herbal remedy—“a thick, stringy, gooey, gross, green liquid,” as Peggy remembered it—and tried to feed it to Lia. When they realized Lia couldn’t swallow, they decided to pour it down the nasogastric tube, and Peggy, certain Lia would die anyway, instructed the nurses to let them do so.

  The Hmong New Year, a multi-day holiday that is traditionally celebrated in the twelfth month of the year, starting at first cock crow on the first day of the waxing moon, happened to fall during Lia’s stay at MCMC. It is the most important and merriest holiday of the Hmong year, a time to banish harmful dabs, ask for the assistance of benevolent household spirits, summon home the souls of dead ancestors, and, in general, secure good fortune for the coming year. It is also a time to dance, sing, play courting games, and dress in embroidered finery, which, even in America, many Hmong women start sewing months in advance. It is thought that anyone who wears old clothes at New Year’s will bring poverty on the family. That year, Foua had made new paj ntaub for all her daughters, using Thai cloth worked with American thread and decorated with antique Indochinese coins. She showed these garments to me once. Lia’s skirt was by far the fanciest, with embroidered stripes of pink, green, and black, and pleats so numerous and fine they looked like the gills of a mushroom. “These are the clothes Lia was going to wear,” she told me. “They were the most beautiful clothes because we loved her so much. No one else is allowed to wear them because they are Lia’s and only Lia’s. I made them because I thought Lia was going to be up and running around our house at New Year’s, but she got sick instead, so she didn’t wear them, and it was the only time in our lives that we ever missed the New Year’s celebration.” May Lee said, “We didn’t do anything at New Year’s, not even the soul-calling ceremony, because the doctors told us Lia was going to die and my family was just crying all the time.”

  Instead, Foua brought a different set of clothes to the hospital: funeral garments. “It is Hmong culture to do that,” explained Nao Kao. “For us Hmong, if you don’t dress them up, then after they pass away, you always dream of them being naked. It is not really good to see a person naked, so we dress them in special clothes. Lia’s mother sewed them for her.” The special clo
thes were a black hat, a black jacket, and a high-waisted, appliquéd skirt. The nurses told Foua that Lia couldn’t actually wear the jacket, since they needed access to her upper body, so at first Foua laid it over her daughter’s hospital gown. Later, when the nurses were out of the room, she disobeyed instructions and dressed Lia properly.

  Lia’s room was always crowded with siblings, cousins, uncles, aunts, and members of the Lee and Yang clans who had traveled from out of town to join what one Nurse’s Note called “the vigil.” Though some nurses did their best to be sympathetic, most were exasperated by the unremitting commotion. “Those people would all yak and raise their voices and gesticulate at each other,” recalled a nurse named Evelyn Marciel. “They were totally fed up with us. They’d ask us what were we doing? Why were we doing it? There wasn’t a question asked that hadn’t been answered ten times over. Anything we were doing was wrong.” Dee Korda also came frequently—Peggy remembers her sitting next to the bed crying—and Jeanine Hilt was there every day. “There was usually no interpreter,” Jeanine recalled, “but you know Foua and I communicated more through the soul anyway. We held each other a lot. When someone was there to translate, Foua and Nao Kao always talked about how much they loved Lia and how special she was to them. I told them how special she was to me too. The only thing I was thankful for is that it had not happened at the foster home. That had been my worst fear, that she would have a massive seizure in foster care. God, it could have happened so easily, and if it had they would have blamed me forever. It would have had ramifications throughout the Hmong community: CPS steals children and they die.”

  On Lia’s second day back at MCMC, Nao Kao demanded that Lia’s subclavian line—a central intravenous line placed with great difficulty at Valley Children’s Hospital—be removed, and all her medications discontinued. Peggy noted in Lia’s Progress Record:

  I held a long discussion with both parents through aid of an interpreter. CPS worker Jeanine Hilt was present. Parents understand that the antibiotics are fighting a severe infection and that without medication Lia may get her infection back and die sooner. They understand that once we remove IV, a new line will NOT be replaced. They understand and still refuse medication. Therefore, meds & IV will be withdrawn.

  “The impression I had,” recalled Peggy, “was that they wanted Lia to be peaceful and not be persecuted anymore. Basically, they wanted her to die with dignity.” Peggy was mistaken. She thought that Foua and Nao Kao wanted to withdraw the medicines because they were artificially prolonging Lia’s life. In fact, though the Lees believed Lia was so sick she might die, they wanted to stop treatment because they thought it was the medicines that were killing her.

  After the IV line was taken out, Foua and Nao Kao announced that they wanted to take Lia home. Her brain damage had fouled up the homeostatic mechanisms that regulated her body temperature, and she was spiking fevers as high as 107.4°, which is potentially fatal. Peggy therefore informed the Lees that Lia needed to stay at MCMC for a few days of observation. “I was sure she was dying,” she recalled, “but that’s the quandary of Western medicine, that you can’t let people die.” Concerned that Lia be kept comfortable during her final days, Jeanine wrote the following memo:

  To: Ernst - Philp

  From: Hilt

  Re: Lia going home

  Before we let Lia go home, let’s reevaluate the family’s desire to do this…Are they physically, emotionally and financially able to take this on? Do they have a bed, linen, prescribed food, stethoscope, pampers etc. etc. on hand? They must have all this, plus Home Health nursing in place before I’m ready to say ok. Are you convinced that they can feed Lia properly? Have they accurately demonstrated their understanding and skill? Will they feed her every four hours?

  By December 9, Jeanine and Peggy had arranged for home nursing visits and for all the necessary supplies, including a suction machine to clear Lia’s secretions and, as Dave Schneider noted, “a large supply of diapers as child is incontinent and presently having diarrhea.” A nurse wrote the following discharge instructions:

  Glassrock Health Services will be by at 8:00 p.m. tonight. Give them prescription.

  Make sure to come to Clinic this Thursday Dec. 11 at 8:00 a.m.

  Keep egg crate mattress pad on at all times.

  Turn her every 2 hours so she does not get infected bedsores.

  Suction her as often as necessary.

  Diet instructions: Feed [formula] every 4 hours during daytime (5 feedings a day)—10 ounces 5 times a day. All foods or medicines go down tube.

  Foua didn’t understand the instructions, and in any case had no intention of giving Lia medicines or anything else through a nasogastric tube (which was intended to circumvent Lia’s impaired sucking and gag reflexes and keep food from going down her trachea). Nonetheless, she signed the line that read, “These instructions have been explained to me and I understand them.” Her signature—just as it had been when she signed the discharge papers after Lia’s birth at MCMC four and a half years earlier—was the single word FOUAYANG.

  At some point that day, Nao Kao was also asked to sign something. It is not included in Lia’s chart, so no one knows exactly what it was, although it probably had to do with the Lees’ decision to withdraw her from MCMC. It is likely that Nao Kao was told that in two hours, after the discharge paperwork was completed, she would be released, and he could take her home to die. His interpretation was somewhat different. He recalled, “One person gives Lia medicine”—this was probably Tylenol for her fever, which the Nurse’s Notes indicate that “father refused”—“and then another person comes and has a paper on a clipboard and makes me sign and says that in two hours, Lia is going to die. They weren’t fixing her. I thought even if they fix her she is going to die here, and if they don’t fix her, she is going to die here, so I might as well just bring her home right now so the older children can see her. I am not satisfied. I am very disappointed at the hospital. I am mad. Is this a hospital that fixes people or makes them die?”

  This was not the first time in the last two weeks that the Lees had been told Lia would die, but for some reason—perhaps because Nao Kao believed it contained such a time-specific prediction—it was the most offensive. In the Hmong moral code, foretelling a death is strongly taboo. It is an unpardonable insult to say to one’s aged grandparent, “After you are dead….” Instead, one says, “When your children are 120 years old….” I asked several Hmong people I knew how they would feel if a doctor told them their child was going to die. “A doctor should never never say that!” exclaimed Chong Moua, a mother of three. “It makes the dab come closer to the child. It is like saying okay, okay, take her.” Koua Her, an interpreter for the health department, said, “In Laos, that means you’re going to kill a person. Maybe poison him. Because how do you know for certain he’s going to die unless you’re going to kill him?”

  One night I told Bill Selvidge that the Lees had perceived the doctors’ comments not as candid prognoses but as threats. “I’m not surprised,” he said. “All those verb tenses! Lia will die, Lia might die, Lia has a ninety-five percent chance of dying. Those nuances would be very confusing through an interpreter. And if the parents thought that people at MCMC were saying Lia should die, maybe they were right. I imagine there were a lot of people here who thought that if Lia was comatose and couldn’t communicate and the only sensation she could feel was pain, it would be better for her if she did die.”

  When Nao Kao thought he was being forced to sign a piece of paper that said his daughter was going to die in two hours, he did what any Hmong in an impossible corner, starting with the legendary Shee Yee, might consider doing: he fled. He grabbed Lia, who was dressed in her funeral clothes, from her bed in the third-floor pediatric unit and started running down the stairs. One of the nurses called a Code X. (Every hospital has a set of emergency codes that are blared over the public address system: Code Blue for dying patients in need of resuscitation; Code Red for fire; Code X for secur
ity breaches.) Nao Kao recalled, “They were chasing after me. They called two policemen”—hospital security guards—“and they wanted me to go back to the hospital. When they called the police, the lady that told me that Lia was going to die came to scold me and said, What are you doing? At that time I was so angry I pushed that nurse and her head went blah.”

  Dave Schneider was paged, stat—that is, urgently and immediately. It was late Friday afternoon at the end of what had already been a bad week for him, and it was about to get worse. Exhausted by the stresses of being a resident—the thirty-three-hour shifts, the constant hectoring of resentful patients, the fear of making a fatal mistake—Dave had requested a three-month leave of absence from MCMC, and had only a few days, which he had hoped would be calm, before he left. “I was about as low as I had ever been in my entire life,” he told me, “and I was in no state to put up with any bullshit from a father, whether he was a caring, concerned father who had customs that were different from mine or not. I mean, I really was not particularly feeling like having a discussion with him about cultural differences.”