The Spirit Catches You and You Fall Down

by Anne Fadiman

  Home visit again with interpreter who explained to the mother the importance of giving all 3 medications daily at correct times (mother has wall plaque which visually demonstrates type of med, amt & time to give medication) & possible results of return of seizures if meds not given. Mother seems to understand & states she’ll continue to give Phenobarb & Tegretol but only 25 mg. of Dilantin AM & PM instead of 25 mg. at AM & 50 mg. PM. Agree to have continued care at Peds clinic.

  Home visit made with interpreter. Didn’t have Medi-Cal card for child so didn’t go to clinic. Doesn’t know where Medi-Cal cards are. Mother has now decided to give 200 mg. Tegretol AM, 25 Dilantin in AM and 60 mg. Phenobarb at night. Mother seems very agitated.

  Father out of house for rest of day—shopping. Mother still seems very unhappy with medical staff making decisions for daughter. Interpreter states mother is unhappy and Public Health nurse observed same by mothers tone of voice & body movements. Assured mother that child can be seen in Peds clinic Monday even without the Medi-Cal card.

  Home visit by interpreter to discuss childs care with father. Interpreter states father also mistrusts medical system & wants another opinion but didn’t state who or where.

  Mother states they just returned from hospital that AM…. Diagnosis for hospitalization unknown to mother but antibiotic prescribed. Mother says she gave client Tegretol & Phenobarb this AM but that she feels there is no reason to give them as they don’t do anything and that the Dilantin (previously prescribed) caused the child to be wild.

  It did not take long for the public health nurses to answer Peggy Philp’s question about whether the Lees were being noncompliant because they hadn’t understood the instructions or because they didn’t want to give the drugs. (Both.) Their faith in medicines had not been strengthened by two routine immunizations Lia had received against diphtheria, pertussis, and tetanus, to which, like many children, she had reacted with a fever and temporary discomfort. All of Lia’s anticonvulsant drugs had far more serious and longer-lasting side effects. In some cases phenobarbital can cause hyperactivity—it may have been responsible for the riotous energy the nurses always noticed when Lia was hospitalized—and, in several recent studies, it has been associated with lowered I.Q. scores. Dilantin can cause hair to grow abnormally all over the body, and gum tissue to bleed and puff out over the teeth. Too much phenobarbital, Dilantin, or Tegretol can cause unsteadiness or unconsciousness. Although Foua and Nao Kao erroneously attributed Lia’s “wildness” to the Dilantin instead of the phenobarbital, they were correct in perceiving that the medicines were far from innocuous. From that point, it was not an enormous leap to the conclusion they had reached by April 3, 1984, when a public health nurse noted, “Father had become more and more reluctant to give medications at all because he feels that the medicines are causing the seizures and also the fever.”

  The idea that the drugs prescribed to cure, or at least attempt to treat, an illness are in fact causing it is not one that most doctors ever encounter. Doctors are used to hearing patients say that drugs make them feel bad, and indeed the unpleasant side effects of many medications are one of the main reasons that patients so often stop taking them. But most patients accept the doctor’s explanation of why they got sick in the first place, and even if they resist the recommended treatment, they at least believe their doctor has prescribed it in good faith and that it is not designed to hurt them. Doctors who deal with the Hmong cannot take this attitude for granted. What’s more, if they continue to press their patients to comply with a regimen that, from the Hmong vantage, is potentially harmful, they may find themselves, to their horror, running up against that stubborn strain in the Hmong character which for thousands of years has preferred death to surrender.

  John Aleman, a family physician in Merced, once hospitalized a Hmong infant with severe jaundice. In order to determine whether therapy with special fluorescent lights would be sufficient or whether it would be necessary to perform a partial exchange transfusion, he had to take repeated blood samples to measure the baby’s bilirubin level. After two or three samples, the parents said their baby might die if any more blood was removed. The doctor explained through an interpreter that the body is capable of manufacturing new blood, and he poured one cc of water into a teaspoon to demonstrate what an insignificant amount was being taken. To his amazement, his logical arguments only strengthened the parents’ opposition. They said if the doctor drew any more blood against their will, they would both commit suicide. Fortunately, at this point Dr. Aleman asked his Hmong interpreter what he should do (a strategy not open to Lia’s doctors during her early years, since no competent interpreter was available). The interpreter volunteered to call a Western-educated Hmong leader who was likely to understand the doctor’s treatment plan; the leader called the head of the family’s clan; the head of the clan called the father’s father; the father’s father called the father; the father talked to the mother; and, having thus received the request through a familiar and acceptable hierarchy, the parents were able to back down without loss of face. The baby had the blood tests and was successfully treated with phototherapy.

  In 1987, Arnie Vang, a two-year-old Hmong boy who lived in Fresno, was diagnosed at Valley Children’s Hospital with testicular cancer. (Arnie’s real name, the one conferred in his hu plig ceremony, was Tong, but his father preferred to call him Arnie because it sounded more American.) His parents, both teenagers who had attended American high schools and spoke and read English fairly well, consented, though reluctantly, to the surgical removal of the affected testis. After the surgery, Arnie’s doctor, an Indian-born oncologist who had never had a Hmong patient before, explained that the next step was a course of chemotherapy. She handed the parents a piece of paper on which she had typed the names of the drugs he would receive and their possible side effects. Her predictions turned out to be accurate. Arnie, who had appeared perfectly healthy after his surgery, lost all his shiny black hair within three weeks after his first cycle of chemotherapy, and every time the drugs were administered, he vomited. Arnie’s parents concluded that the chemotherapy was making him sick and refused to bring him in for further treatment. After giving the Vangs three days’ warning, his doctor called Child Protective Services, the state agency that deals with child abuse, which dispatched two social workers and two police officers to their house.

  Arnie’s mother, Dia Xiong, explained to me later, “When they come, my husband isn’t there. I say, Wait for my husband. But they say they can’t wait. I say, Please that you go away. I hold my son. I hold him so tight. I say, Give my son back. Two police, they hold my hand behind my back. I can’t move. I am scared. My two daughters are crying. The police hold my hand, they take my son away! I scream and cry. Then I take my husband’s guns from the bedroom closet. They were two long guns. We bought them to shoot squirrels and deer, not to shoot people. I say I will kill myself and the little girls if they don’t bring him back. I just yell, Please bring my son back to me. I say, Just bring! I want to hold my son!” A SWAT team was summoned, and for three hours the Vangs’ immediate neighborhood was closed to traffic. Finally some police officers brought Arnie back from the hospital, and when Dia Xiong saw him, she dropped the guns and was driven, in handcuffs, to the psychiatric unit of a local hospital. She was released the next day, and no criminal charges were filed against her. Arnie’s doctor administered one of the three remaining cycles of chemotherapy, but agreed, although it was against standard protocol, to forgo the last two. Arnie is still in remission today. His doctor was haunted for years by the thought that three lives were nearly lost in order to save one—“and for that one life,” she told me, her voice shaking and her eyes filling with tears, “the cure wasn’t even a hundred percent certain.”

  One night, while Lia Lee was in the emergency room at MCMC for the umpteenth time and a translator was present, Dan Murphy, who happened to be on call, brought up the subject of her anticonvulsant medications. Her mother informed him that she didn’t think
you should ever have to give a medicine forever. (It is likely that the only Western drugs Foua and Nao Kao had encountered in Asia were fast-acting antibiotics.) Dan recalled, “I remember that I was just watching them and they looked very resolute, like, you know, we are doing what we think is right. They weren’t about to take any garbage. I felt they really cared for Lia, and they were doing the best, the absolute best they knew how as parents, to take care of the kid. That is what I felt about them. I don’t remember having a feeling of anger, but I remember having a little bit of a feeling of awe at how differently we looked at the world. It was very foreign to me that they had the ability to stand firm in the face of expert opinion. Neil and Peggy are easily the best pediatricians in the county, yet Lia’s parents didn’t hesitate to say no to them or modify the drug dosage or do things however they saw fit. And the other thing that was different between them and me was that they seemed to accept things that to me were major catastrophes as part of the normal flow of life. For them, the crisis was the treatment, not the epilepsy. I felt a tremendous responsibility to stop the seizures and to make sure another one never happened again, and they felt more like these things happen, you know, not everything is in our control, and not everything is in your control.”

  Soon after this encounter, in the late afternoon of January 20, 1984, Dan Murphy was on call again when Lia came to the emergency room in the throes of a grand mal seizure. Among the notes he dictated were: “The patient is an 18-month-old Hmong child with a long history of seizures. The parents report that they had discontinued the medications about 3 months ago because the patient was doing so well.” Dan did not have much time to reflect on this alarming news, because shortly after he started Lia’s phenobarbital IV and admitted her to the hospital, he was called to assist at another emergency room crisis in which the patient died, and, immediately thereafter, he was summoned to the obstetrical unit to deliver a baby. At 11:20 p.m., in the thirteenth hour of a thirty-three-hour shift, Dan was paged because Lia had started seizing again, this time violently. Since Lia had responded well to the phenobarbital, Dan had not summoned Neil Ernst or Peggy Philp to the hospital. He therefore had to deal on his own with the most severe episode of status epilepticus Lia had yet suffered. He administered two more massive doses of phenobarbital. “Sometimes you have to give so much medicine to stop the seizure that they stop breathing,” said Dan. “That happened.” Lia turned blue. First Dan gave her mouth-to-mouth resuscitation, and when she failed to resume breathing on her own, he decided that a breathing tube had to be placed down her trachea. “Lia was only the second child I had ever intubated under crash circumstances, and I didn’t feel all that confident. You have this instrument that looks sort of like a flashlight, with a blade that snaps down, and you have to get the tongue out of the way, and the problem is that if you don’t know exactly what you are doing, instead of putting the tube down the trachea you put it down the esophagus, and you start to ventilate but the patient is not getting any oxygen. So it’s literally a do-or-die situation, either you get it in and they do okay or you don’t and they might die. This time I saw what I needed to see and the tube went right in and it worked perfectly and I felt really good. I thought, well, I guess I am becoming a doctor.”

  Lia’s parents were standing outside the ward while Dan intubated Lia. “By the time they came back in, she was unconscious and she had this tube taped to her mouth. I remember that they were very upset about that. I remember that the mother just had a very displeased look on her face.” Because MCMC was not equipped with a respirator for babies, Dan decided that Lia, who was being given oxygen on a temporary basis through a manually operated bag, should be transferred by ambulance to their pediatric backup facility, Valley Children’s Hospital in Fresno, sixty-five miles south of Merced. She regained consciousness there, and was able to breathe on her own after twenty-four hours on a respirator. Lia spent nine days in Fresno, spiking high temperatures from aspiration pneumonia and gastroenteritis, but did not seize again. On her History and Physical Examination form, her name is listed as Lai Lee; on her discharge summary, she is Lee Lei. Through an English-speaking cousin who accompanied Foua and Nao Kao to Fresno, the admitting resident was told that Lia had been off medications for one week (rather than the three months recorded by Dan Murphy) because the prescription had run out and the family had not refilled it. The resident wrote, without irony, “I am not entirely sure if all the history is reliable.”

  Two months later, Peggy Philp noted in an Ambulatory Care Physician’s Report that Lia, who was then twenty months old, had “no words (altho used to say sev. words).” In her diagnosis, she wrote “?Dev. delay”—a conclusion she had dreaded reaching for some time. It is not surprising that a child who had seized as frequently and severely as Lia was beginning to show the first signs of retardation, but Neil and Peggy found the situation particularly tragic because they considered it preventable. Looking into Lia’s future, they foresaw a steady decrease in intellectual capacity unless the Lees started giving Lia her anticonvulsants regularly—and even that might not halt the decline, since the brain damage resulting from her erratic medication regimen had already made her seizure disorder far less tractable than it would have been if compliance had been perfect from the start. Neil and Peggy perceived Lia as being more retarded (though still only mildly so) than the visiting public health nurses did. Effie Bunch said, “The doctors only saw her when she was sick and never in her home environment. When we saw her, sometimes she was a windup toy because of the phenobarbital and sometimes she was post-seizure and looked like a little ball of dough in the corner, but sometimes she was just bright and cute and actively playing, happy, gay, climbing, crawling, on her mother’s back, laughing and chattering and what have you.” Testing Lia’s intelligence was difficult because her hyperactivity made it hard for her to focus on assigned tasks, and both the doctors’ instructions and Lia’s verbal responses were always filtered through interpreters of dubious competence. When Neil and Peggy administered a Denver Developmental Screening Test at fourteen months, the results were normal, but at twenty-two months, although Lia passed “Plays ball with examiner,” “Plays pat-a-cake,” “Imitates speech sounds,” and “Neat pincer grasp of raisin,” she failed “Uses spoon, spilling little,” “Washes and dries hands,” “Points to 1 named body part,” “3 words other than Mama, Dada,” and “Tower of 8 cubes.”

  When Lia was two, a consulting neurologist recommended that she be started on Tegretol, continued on Dilantin, and gradually weaned off phenobarbital because it was contributing to, or even entirely causing, her hyperactivity. Unfortunately, the Lees had now decided that they liked phenobarbital, disliked Dilantin, and were ambivalent about Tegretol. A visiting nurse once found Lia dazed and staggering after receiving an overdose of phenobarbital (which, though it can raise some patients’ energy levels when taken in normal doses, has the opposite effect when taken to excess). The next day, when Lia was brought to the pediatric clinic, the resident on duty—who happened to be Gary Thueson, the doctor who had delivered her—noted, “Apparently parents felt if phenobarb was good 2x is better so double dosed yesterday.” On July 20, 1984, Neil Ernst wrote in a Pediatric Clinic Note (a copy of which he sent to the Health Department):

  The mother states that she will not give the Dilantin at home. In addition, she also states that she has increased the child’s Phenobarbital to 60 mg. b.i.d. Finally the mother states that she ran out of Tegretol and the child has received no Tegretol in the last 4 days. The mother brought a large sack full of medication bottles and on closer examination by myself there were 3 half empty bottles of Tegretol. The mother stated that she was unaware that these bottles were Tegretol. In addition, the mother also was unable to identify the Dilantin bottle and gave that bottle to me and said that she did not want it at home.

  On rereading this note many years later, Neil said he could still remember the rage he had felt when he wrote it. He and Peggy, who are both aware, and even proud, of thei
r joint reputation for glacial unflappability, couldn’t remember another case that had made them feel this way. “I remember wanting to shake the parents so that they would understand,” said Peggy. A handful of times, Neil gave Foua a hug while Lia was seizing, but most of the time, while Lia was between the ages of eighteen months and three and a half years, he was too angry to feel much sympathy toward either of her parents. “The best thing I could have given Lia’s mother was compassion, and I wasn’t giving her any and I knew that I wasn’t giving her any,” he said. “There was just too much aggravation. It was like banging your head against a wall constantly and not making any headway. There was the frustration of the nighttime calls and the length of time it took and the amount of energy and sorrow and lack of control. I mean, every time I saw Lia I would just, you know, it was like—ohhhhh, you would just get so frustrated! When she came to the emergency room in status there would be sort of like a very precipitous peak of anger, but it was quickly followed by the fear of having to take care of a horribly sick child who it was very difficult to put an IV in.” Peggy added, “Some of the anger came from that. From our own fear.”

  It was hard to work so hard and not receive a single word of thanks—in fact, to have their efforts invariably greeted with resentment. Neil and Peggy never dwelled on the financial aspects of the case, since one of the reasons they chose to work in Merced was, in Neil’s words, “to serve underserved people regardless of their form of payment.” But it was an undeniable fact that Lia’s family had never paid a penny for the hundreds of hours of care she had received—and yet failed utterly to appreciate the generosity of Medi-Cal and of Neil and Peggy’s services, which, because of the low level of reimbursements, were, in effect, partially voluntary. (No other pediatricians practicing in Merced at that time were willing to accept Medi-Cal patients.) The Lees also never showed their doctors the kind of deference reflexively displayed by even their most uncooperative American patients. It was as if Neil and Peggy’s four years of medical school, their three years of residency, their awards, their publications, their telephone consultations with neurologists, even the hours they spent in the Merced Public Library reading old National Geographic articles about the Hmong, all counted for nothing. The worst aspect of the case was that as conscientious physicians and dedicated parents, they found it agonizing to watch Lia, as it would have been for them to watch any child, fail to receive the treatment they believed might help her lead a normal life. And it seemed as if the situation would never end. However frustrated they were, they never considered abandoning the case. Unless Lia died, they could see themselves driving to the emergency room in the middle of the night until she was grown up and had graduated to the care of an internist, with whom they already felt an anticipatory bond of sympathy.