by Robert Coles
When the call came, I went out and found her coiled on her couch. When she pulled her skirt up and I saw a cupped-out space underneath her navel, I knew we had our share of work ahead. The baby was in what we call a “persistent posterior position,” which means that labor may be long and back pain relentless. If our little Becca continued to conceal herself, as she seemed bound to do, the baby would stay in retreat and her energy would pour out, wasted. If she continued to curl up like a snail in its shell, we would be undone. Her eyes, I noticed, wandered over to John, beseeching his attention.
“You know,” I said to her experimentally, “when you’re canning pears, you sometimes shake the jar to get halves to find their space?”
She nodded.
“Well, that’s what we need to do for your baby. Jiggle him up a little, so his head can find the easy way out.”
“How should I do that, Penny?” she asked, without a trace of confidence.
And John sat, careless as the devil, in a lounge chair by the window.
As I looked over at him, thinking about giving one of his casually flung out legs a good kick, I noticed the window behind him. It framed sunlight and a pasture that spilled down to a spot in a stream where the water coiled and made a pool. Ducks glided about on it. Feeling drawn to it myself, I said I thought it might be well for Becca to take a walk, on the condition that John go along. “You’ll have to hold her hand so she doesn’t fall, of course, and let her lean up against you when she has a contraction.”
“We often walk down by the creek,” he said, agreeably and comfortably—as if this was something he knew how to do. And so I left them alone for a while.
When I returned some time later, Becca was serving sandwiches. She raised hers to her mouth, apparently determined—per my instructions—to keep up her strength. Try as she might, she could not comply, and when I said she needn’t eat if she didn’t want to, she dropped her sandwich on her plate and her head on her arms. I looked hopefully at John, thinking that he might, by now, be following her reactions, but instead he was picking up her sandwich. As soon as he finished it, however, he rose with purpose, went into the bathroom, and returned with a hairbrush. Standing behind Becca, he loosened the knot of her bandana, undid her hair, and let it unfurl in red licks around her shoulders. Then he ran his fingertips gently up the side of her head, gathered a mass of her hair in one hand and sank the brush deep into its thick waves with the other. As he brushed, her head swayed gently. Her neck became loose and languid, and the sighs that flushed out of her were heavy.
Seeing that they were finding their way, I slipped as quickly as I could out into the yard and down to the stream, where I sat and waited for an outcome utterly beyond my control. When the sun dropped out of sight and I saw the flash and glow of a lantern lighting in the kitchen window, I rose, thinking that I had better go back in to work. Even as I gathered myself up, however, I stopped: Music was coming from the house. Music, so alien in an Amish household, coming out of this one, streaming out of windows, lapping down over the pasture, trailing into the stream. I stood a long time—unthinkable to break the thread of melody—then found that it was strong and continuous and so I followed it to its source. On my toes, peering in the farmhouse window, I saw Becca, head high and proud, red hair streaming and gallant down her back. She was pacing round the kitchen table, John following her, now playing “Swing Low, Sweet Chariot” on his harmonica.
I turned away once more and leaned against the clapboards while more songs followed and until the music drained away; until I heard Becca’s groan. As I went in, John was helping her to bed; then he held her hand, smoothed her forehead, and ultimately he cradled her shoulders in his arms. In that position she threw out a boy baby, for whom John reached, held, and gave over to her.
Anne Fadiman
from THE SPIRIT CATCHES YOU AND YOU FALL DOWN
Lia is a young Hmong patient with a catastrophic seizure disorder. The struggle of her parents, Foua and Nao Kao, to provide care for their daughter results in clashes with both the medical system and the child welfare agencies. In the end, Lia is declared legally “brain dead,” and the debate rages as to who was to blame: the parents, who failed, in the early part of Lia’s illness, to provide the prescribed medicine, or the American doctors and nurses, who failed to understand the Hmong culture and work out a resolution when their values and beliefs collided.
The Spirit Catches You and You Fall Down is an in-depth examination of the struggle between value systems and cultures, one having applicability to every encounter mainstream medicine has with patients from other cultures. The “ability to communicate effectively” with patients and their families is a complex and challenging charge in a multicultural world.
ANNE FADIMAN is a journalist and editor of The American Scholar. The Spirit Catches You and You Fall Down was awarded a National Book Critics Circle Award for Nonfiction.
Since Lia’s brain death, whatever scant trust Foua and Nao Kao had once had in American medicine had shrunk almost to zero. (I say “almost” because Foua exempted Neil and Peggy, Lia’s primary care physicians.) When their daughter May broke her arm, and the doctors in the MCMC (Merced Community Medical Center) emergency room told them it needed a cast, Nao Kao marched her straight home, bathed her arm in herbs, and wrapped it in a poultice for a week. May’s arm regained its full strength. When a pot of boiling oil fell from the electric stove onto Foua’s skirt, setting it on fire and burning her right hip and leg, she sacrificed two chickens and a pig. When Foua got pregnant with her sixteenth child, and had an early miscarriage, she did nothing. When she got pregnant with her seventeenth child and had a complicated miscarriage in her fourth month, Nao Kao waited for three days, until she started to hemorrhage and fell unconscious to the living room floor, before he called an ambulance. He consented to her dilation and curettage only after strenuous—in fact, desperate—persuasion by the MCMC resident on obstetric rotation. Nao Kao also sacrificed a pig while Foua was in the hospital and a second pig after she returned home.
Before she was readmitted to Schelby, Lia was routinely vaccinated against diphtheria, pertussis, and tetanus. At about the same time, she started to develop occasional seizurelike twitches. Because they were brief, infrequent, and benign—and also, perhaps, because he had learned from bitter experience—Neil decided not to prescribe anticonvulsants. Foua and Nao Kao were certain that the shots had caused the twitches, and they told Neil that they did not want Lia to be immunized ever again, for anything.
Dan Murphy, who became the director of MCMC’s Family Practice Residency Program, once told me that when you fail one Hmong patient, you fail the whole community. I could see that this was true. Who knew how many Hmong families were giving the hospital a wide berth because they didn’t want their children to end up like the second-youngest Lee daughter? Everyone in Merced’s Lee and Yang clans knew what had happened to Lia (those bad doctors!), just as everyone on the pediatric floor at MCMC knew what had happened to Lia (those bad parents!). Lia’s case had confirmed the Hmong community’s worst prejudices about the medical profession and the medical community’s worst prejudices about the Hmong.
At the family practice clinic, the staff continued to marvel at the quality of care the Lees provided to their clean, sweet-smelling, well-groomed child. But at the hospital next door, where the nurses had had no contact with Lia since 1986, the case metastasized into a mass of complaints that grew angrier with each passing year. Why had the Lees been so ungrateful for their daughter’s free medical care? (Neil—who did not share the nurses’ resentment—once calculated that, over the years, Lia had cost the United States government about $250,000, not counting the salaries of her doctors, nurses, and social workers.) Why had the Lees always insisted on doing everything their way? Why—this was still the worst sin—had the Lees been noncompliant? As Sharon Yates, a nurse’s aide, told me, “If only the parents had given Lia the medicine, she wouldn’t be like this. I bet when she came back from that foste
r home, they just didn’t give her any medicine.”
But I knew that when she returned from foster care, Foua and Nao Kao had given Lia her medicine—4 ccs of Depakene, three times a day—exactly as prescribed. Hoping to clear up some questions about Lia’s anticonvulsants, I went to Fresno to talk with Terry Hutchison, the pediatric neurologist who had overseen her care at Valley Children’s Hospital. I had noticed that in one of his discharge notes, written nine months before her neurological crisis, he had described Lia as “a very pretty Hmong child” and her parents as “very interested and very good with Lia.” I had never seen phrases like that in her MCMC chart.
Bill Selvidge had told me that Dr. Hutchison was “a known eccentric,” beloved by his residents for his empathy but dreaded for his insistence on doing rounds at 4:00 A.M. He had an exiguous crewcut and on the day I met him was wearing a necktie decorated with a large bright-yellow giraffe. A sign in the hall outside his office, hung at toddler eye level, read:
KIDS ZONE ENTER WITH CARE AND LOVE
When I asked him about the relationship between Lia’s medications and her final seizure, he said, “Medications probably had nothing to do with it.”
“Huh?” I said.
“Lia’s brain was destroyed by septic shock, which was caused by the Pseudomonas aeruginosa bacillus in her blood. I don’t know how Lia got it and I will never know. What I do know is that the septic shock caused the seizures, not the other way around. The fact that she had a preexisting seizure disorder probably made the status epilepticus worse or easier to start or whatever, but the seizures were incidental and not important. If Lia had not had seizures, she would have presented in a coma and shock, and the outcome would probably have been the same, except that her problem might have been more easily recognized. It was too late by the time she got to Valley Children’s. It was probably too late by the time she got to MCMC.”
“Did her parents’ past noncompliance have anything to do with it?”
“Absolutely nothing. The only influence that medications could have had is that the Depakene we prescribed might have compromised her immune system and made her more susceptible to the Pseudomonas.” (Depakene occasionally causes a drop in white blood cells that can hamper the body’s ability to fight infection.) “I still believe Depakene was the drug of choice, and I would prescribe it again. But, in fact, if the family was giving her the Depakene as instructed, it is conceivable that by following our instructions, they set her up for septic shock.”
“Lia’s parents think that the problem was caused by too much medicine.”
“Well,” said Dr. Hutchison, “that may not be too far from the truth.”
I stared at him.
“Go back to Merced,” he said, “and tell all those people at MCMC that the family didn’t do this to the kid. We did.”
Driving back to Merced, I was in a state of shock myself. I had known about Lia’s sepsis, but I had always assumed that her seizure disorder had been the root of the problem. The Lees were right after all, I thought. Lia’s medicine did make her sick!
That night I told Neil and Peggy what Dr. Hutchison had said. As usual, their desire to ferret out the truth outweighed their desire—if indeed they had one—to defend their reputation for infallibility. They immediately asked for my photocopy of Lia’s medical chart, and they sat together on Bill Selvidge’s sofa, combing Volume 5 for evidence, overlooked during the crisis, that Lia might already have been septic at MCMC. Murmuring to each other in their shared secret language (“calcium 3.2,” “platelets 29,000,” “hemoglobin 8.4”), they might have been—in fact, were—a pair of lovers exchanging a set of emotionally charged intimacies.
“I always thought Lia got septic down at Children’s when they put all those invasive lines in,” said Peggy. “But maybe not. There are some signs here.”
“I did too,” said Neil. “If I’d thought she was septic here at MCMC, I would have done a lumbar puncture. I didn’t start her on antibiotics because every single time Lia had come in before that, she was not septic. Every other time, the problem was her seizure disorder, and this was obviously the worst seizure of her life. I stabilized her, I arranged for her transport, and then I went home before all the lab results were back.” He didn’t sound defensive. He sounded curious.
After Neil and Peggy went home, I asked Bill Selvidge whether he thought Neil had made a mistake in not recognizing and treating Lia’s sepsis, even though Dr. Hutchison believed that her fate was probably sealed before she arrived in the MCMC emergency room—and even though the increasing severity of her epilepsy might eventually have led to serious brain damage if sepsis had never entered the picture.
“Neil leaves no stone unturned,” said Bill. “If Neil made a mistake, it’s because every physician makes mistakes. If it had been a brand-new kid walking off the street, I guarantee you Neil would have done a septic workup and he would have caught it. But this was Lia. No one at MCMC would have noticed anything but her seizures. Lia was her seizures.”
To MCMC’s residents, Lia continued to be her seizures—the memory of those terrifying nights in the emergency room that had taught them how to intubate or start IVs or perform venous cutdowns. They always spoke of Lia in the past tense. In fact, Neil and Peggy themselves frequently referred to “Lia’s demise,” or “what may have killed Lia” or “the reason Lia died.” Dr. Hutchison did the same thing. He had asked me, “Was Lia with the foster parents when she died?” And although I reminded him that Lia was alive, five minutes later he said, “Noncompliance had nothing to do with her death.” It wasn’t just absentmindedness. It was an admission of defeat. Lia was dead to her physicians (in a way, for example, that she was never dead to her social workers) because medicine had once made extravagant claims on her behalf and had had to renounce them.
Once I asked Neil if he wished he had done anything differently. He answered as I expected, focusing not on his relationship with the Lees but on his choice of medication. “I wish we’d used Depakene sooner,” he said. “I wish I’d accepted that it would be easier for the family to comply with one medicine instead of three, even if three seemed medically optimal.”
Then I asked, “Do you wish you had never met Lia?”
“Oh, no, no, no!” His vehemence surprised me. “Once I might have said yes, but not in retrospect. Lia taught me that when there is a very dense cultural barrier, you do the best you can, and if something happens despite that, you have to be satisfied with little successes instead of total successes. You have to give up total control. That is very hard for me, but I do try. I think Lia made me into a less rigid person.”
The next time I saw Foua, I asked her whether she had learned anything from what had happened. “No,” she said. “I haven’t learned. I just feel confused.” She was feeding Lia at the time, making baby noises as she spooned puréed zaub the spinachlike green she grew in the parking lot, into the slack mouth. “I don’t understand how the doctors can say she is going to be like this for the rest of her life, and yet they can’t fix her. How can they know the future but not know how to change it? I don’t understand that.”
“Well, what do you think Lia’s future will hold?” I asked.
“I don’t know these things,” said Foua. “I am not a doctor. I am not a txiv neeb. But maybe Lia will stay hurt like this, and that makes me cry about what will happen. I gave birth to Lia, so I will always take care of her with all my heart. But when her father and I pass away, who will take care of Lia? Lia’s sisters do love her, but even though they love her, maybe they will not be able to take care of her. Maybe they will need to study too hard and work too hard. I am crying to think that they are just going to give Lia away to the Americans.” Foua wept soundlessly. May Ying embraced her and stroked her hair.
“I know where the Americans put children like Lia,” she continued. “I saw a place like that in Fresno where they took Lia once, a long time ago.” (Foua was recalling a chronic care facility for retarded and disabled children wher
e Lia had been temporarily placed, before her year in foster care, while her medications were monitored and stabilized.) “It was like a house for the dead. The children were so poor and so sad that they just cried. They cried all over. One child had a big head and a really small body. Other children had legs that were all dried up and they just fell on the floor. I have seen this. If the Americans take Lia there she will want to die, but instead she will suffer.”
Foua brushed her tears from her cheeks with the back of her hand, in a quick, brusque gesture. Then she wiped Lia’s mouth, far more gently, and slowly started to rock her. “I am very sad,” she said, “and I think a lot that if we were still in Laos and not in the United States, maybe Lia would never be like this. The doctors are very very knowledgeable, your high doctors, your best doctors, but maybe they made a mistake by giving her the wrong medicine and they made her hurt like this. If it was a dab that made Lia sick like this in Laos, we would know how to go to the forest and get herbs to fix her and maybe she could be able to speak. But this happened here in the United States, and Americans have done this to her, and our medicine cannot fix that.”
It was also true that if the Lees were still in Laos, Lia would probably have died before she was out of her infancy, from a prolonged bout of untreated status epilepticus. American medicine had both preserved her life and compromised it. I was unsure which had hurt her family more.
Since that night with Foua, I have replayed the story over and over again, wondering if anything could have made it turn out differently. Despite Dr. Hutchison’s revisionist emendation of the final chapter, no one could deny that if the Lees had given Lia her anticonvulsants from the beginning, she might have had—might still be having—something approaching a normal life. What was not clear was who, if anyone, should be held accountable. What if Neil had prescribed Depakene earlier? What if, instead of placing Lia in foster care, he had arranged for a visiting nurse to administer her medications? What if he had sought out Blia Yao Moua or Jonas Vangay or another Hmong leader who straddled both cultures, and had asked him to intervene with the Lees, thus transferring the issue of compliance to a less suspect source? What if MCMC had had better interpreters?