The Left Atrium - CMAJ

174 JAMC • 27 JUILL. 1999; 161 (2)

© 1999 Canadian Medical Association

Lia Lee was three months old whenthe spirit first caught her. Her sis-

ter slammed a door, and then Lia rolledher eyes and went into an epileptic fit.Her family had no doubt that the door-slamming provoked an evil spirit, a dab,to cause the fit, and that the fit madeLia special as well as ill. Lia’s parentstook her to hospital. Born in Laos, Lia’sparents are Hmong, members of aonce-remote Indochinese hill tribe witha distinct culture that, despite persecu-tion and repeated migrations, has beenkept intact for more than 4000 years.Like most Hmong refugees in theUnited States, they neither spoke norunderstood English. There were no in-terpreters at the hospital, and the fitwas over by the time they arrived.

Lia’s family is among the more than10 000 Hmong who have settled in theunlikely town of Merced, a communityof 61 000 in California’s Central Valleythat boasts the Yosemite Dental SocietySmile Contest and the Romp ’n Stom-pers Square Dance. The cultural mis-match is apparent in all aspects of theirlives, not least with respect to medicalcare. Health care workers have foundthe Hmong problematic because ofcommunication difficulties, their lack ofcompliance (that awful word for aneven worse concept) in taking medica-tions and keeping follow-up appoint-ments, and their custom of being vis-ited in hospital by numerous wailing,chanting, gong-banging, chicken-sacri-ficing relatives.

When Lia was examined her lungswere found to be congested, and shewas sent home with a prescription forantibiotics. In the next three monthsshe had at least 20 more fits, and she

was still fitting the third time she wasseen in hospital. On that occasion shewas examined by Dr. Dan Murphy, afamily practice resident who was inter-ested in Hmong culture. He did a fullwork-up, which meant that Lia’s par-ents had to consent to procedures theycould not have understood. She wasdischarged with three prescriptions.Despite an “explanation” in sign lan-guage, her parents had no idea what themedicine was for, how much to give, or when. Lia’smother, whohad learned towrite her nameto satisfy whatshe viewed as a strange Amer-ican penchantfor signingforms, hadsigned a pieceof paper sayingshe wouldbring Lia forfollow-up. Nothaving under-stood why sheshould bringLia back, shedidn’t. Thusbegan a trage-dy that reachedShakespearianproportions.

During thenext three years, Lia’s seizing grew farworse. She showed increasing signs ofdevelopmental delay. Tests showed thatshe was not being given her medica-tions. The two pediatricians in charge ofthe department, Peggy Philp and Neil

Ernst, became increasingly desperate.They were, Fadiman writes, two of themost dedicated doctors you could findanywhere. Every time Lia was admitted,even at three o’clock in the morning,one of them would drive to the hospitalto see her. They wanted to ensure that alanguage barrier would not stand in theway of Lia’s care. But the problem wasnot just that Lia’s parents did not un-derstand English or understand the doc-tors. The doctors did not understandtheir patient or her culture.

In those three years Lia’s drug regi-men was changed 22 times. Lia’s par-ents found that many of the drugsmade her worse, and when that hap-pened they discontinued them. Thedroves of social workers who visitedtheir home were met with polite stone-walling. Most eventually went into

burn-out. Philpand Ernst, con-vinced that Liawas slidingdownhill be-cause she wasnot being givenher medication,had her takeninto care. ThusLia’s parentsdiscovered thatin the land ofthe free doctorscan take yourchildren away.Lia continued to get worse.While she wasin care, with awonderful fam-ily who followeddoctors’ ordersto the letter, shestill got worse.

Meanwhile, social workers and newly-recruited translators worked hard tomake the Lees understand the need forgiving the drugs correctly. Nearly ayear later, when the Lees were deemedready, Lia was returned home. And still

Culture collisionThe spirit catches you and you fall down: a Hmong child, her American doctors, and the collision of two culturesAnne FadimanNew York: Farrar Straus & Giroux, New York; 1998348pp. $19.95 (paper) ISBN 0-374-52564-1

The Left AtriumA

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The Left Atrium

CMAJ • JULY 27, 1999; 161 (2) 175

she got worse, even when tests showedthat she was receiving the proper dosesof medication.

Three months later, at a respite carecentre, Lia fell off a swing and wentinto the worst status epilepticus herdoctors had ever seen. No one knowswhether she was fitting because shefell, or whether she fell because she fit-ted. She developed a Pseudomonasaeruginosa bacteremia and sank into avegetative state. Her fits had stoppedforever. She was quadriplegic, inconti-nent and brain dead. The doctors senther home to die in the arms of heradoring family.

That was in 1986. Lia is still alive.

Her family removed the hated nasogas-tric tube when she was brought home,and so they no longer qualify for freeformula. Her doctors keep her suppliedwith free samples instead. Lia’s motherspoons formula down her throat and isadept at getting her to swallow it with-out gagging. She grows special herbsfor Lia. She has the shaman in, and sac-rifices pigs and chickens on auspiciousoccasions. She chews food in her ownmouth and then feeds it, like a motherbird, to Lia. Fadiman writes that shehas seen other children in persistentvegetative states in institutions. Theyhave pallid skin, are a bag of bones, andsmell faintly of urine. In contrast, Lia

looks beautiful and smells delicious.Read this book. It is superbly writ-

ten, utterly fair-minded, impeccably re-searched and has the pace of a literarynovel. Among the enthusiastic endorse-ments posted on the Amazon Web siteis the following comment by Dan Mur-phy: “Never have I felt so fairly treatedin defeat, and never have I felt so muchrespect for an author’s skilful distilla-tion of a tragically murky confrontationof cultures.”

Caroline Richmond

Caroline Richmond is a freelance writerliving in London, England.

Bathers in High Park Sanitarium, Toronto, Ont., July 26, 1914. The sign in the background advertises “Battle Creek Sanitar-ium methods in the treatment of Rheumatism, [?] Anemia, [word illegible], Diabetes, Goitre, Constipation and diseases ofthe Heart, Kidneys and Nervous System.” Founded by Adventists, the sanitarium at Battle Creek, Michigan, promoted hy-drotherapy, exercise and a vegetarian diet. In 1894 its chief physician, John Harvey Kellogg, and his brother William KeithKellogg invented corn flakes as a dietary substitute for bread.

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One thousand words