To a culture that didn't use calendars, giving a certain medicine at a certain hour of the day was incomprehensible. Neil and Peggy didn't consider that a somewhat less effective, but easier-to-follow drug regimen may have been better given the state of affairs. Instead, the Western idea of doing as much as medically possible for as long as medically possible prevailed. When Nao Kao and Foua failed to comply, Neil and Peggy viewed them as unable or unwilling to follow what was to them, directions that could save Lia's life. If Neil and Peggy had asked Nao Kao and Foua why they didn't comply, perhaps a productive dialog could have been created. When the author asked Peggy and Neil about it, they said that they had had no idea that Nao Kao and Foua would even consider traditional medicine, because they looked so Americanized.
Despite Neil and Peggy's perceptions, Nao Kao and Foua were very responsive to Lia's epilepsy, reassuring her before a seizure, and placing her in a soft place while she seized, as well as hiring traditional Hmong healers for her to perform ritual animal sacrifices to recall her soul from the dab. In another example, Nao Kao and Foua declined to give Lia the prescribed Tegretol because it made her hyperactive, or "wild." The Hmong practiced their own herbal medicine, and Nao Kao and Foua used their traditional Hmong herbal medicine for Lia, in combination with regular visits to MCMC. Nao Kao and Foua even tried to change her name to fool the dab, though when Neil and Peggy didn't comply, Nao Kao and Foua blamed them for the ineffectiveness of the treatment. As Lia got older, her seizures got worse, which was frightening for all involved. Nao Kao and Foua blamed the Western doctors' treatment, and Peggy and Neil blamed Nao Kao and Foua's inability to stick to the medication regimen.
Nao Kao and Foua, in contrast, were frustrated by the side effects of the medicine on their daughter. While Western doctors see hyperactivity or low energy as normal side effects of medicine that are tolerated for long-term benefit, Nao Kao and Foua saw the doctors as actually making Lia worse. In fact, they viewed Western medicine as interfering with their native traditions' healing power, or neeb. In addition, something that Neil and Peggy probably could not have comprehended was that Nao Kao and Foua didn't necessarily want Lia to be cured -- her affliction was a badge of honor -- they simply wanted her to be healthy. As a young toddler, she was generally healthy and energetic, which made the urgency of Neil and Peggy's commands unfathomable to Nao Kao and Foua. Nao Kao and Foua found it appropriate to give Lia a little medicine, just enough to make her healthy, but not enough to cure her. Neither could communicate the rightness of their actions to each other. That lack of communication made the situation damaging.
The status of communication about Lia's medical care deteriorated to the point that Neil and Peggy felt legally required to contact Child Protective Services because Nao Kao and Foua were in noncompliance with Neil and Peggy's orders about medication -- medical neglect. In a way, the medical system had eaten 3-year-Lia, which was what Nao Kao, Foua, and the other Hmong had feared when they first learned about this weird system. Intercultural...
No one doubted that Lia was doted upon and cared for by her parents, which the Kordas, Lia's foster family, realized when Foua visited Lia at every opportunity. When Lia was transferred to MCMC, Dee found the nurses rude and the restraints unnecessary. Perhaps the nurses had some resentment of their own that they took out on Lia. Nao Kao and Foua were as traumatized as Lia. They saw Lia as having become "government property." Foua even became suicidal. Nonetheless, Jeanine Hilt, Lia's assigned caseworker, recognized Lia's attachment to her mother, and Foua's devotion. Jeanine became an advocate for Lia's family, even as she taught Foua to measure and manage Lia's medication properly. After a year, Lia returned home to her family.
Eventually, after a disastrous serious of events, Lia ended up in the ICU of a nearby hospital. A Dr. Kopacz realized that Lia actually had sepsis, which had kicked off the seizing. He ordered a total blood transfusion and a spinal tap. Foua and Nao Kao were overwhelmed when they heard the news. To them, a spinal tap was a guillotine for the soul. Their daughter's soul was irrevocably lost, and Dr. Kopacz was to blame. The spinal tap could have been avoided, had the doctors respected the parents and asked their wishes, as they would have done for white, middle class parents.
Now, when Western medicine had given up on Lia, Peggy and Neil allowed Nao Kao and Foua to take her home. The doctors understood that Lia would die, but when the nurses insisted that Nao Kao sign to accept responsibility for Lia's death at home, Nao Koa thought that the nurses were threatening Lia, and so he tried, and failed to steal Lia out of the hospital. This was one more example of terrible communication. Nonetheless, Lia eventually went home, where her parents baffled Neil and Peggy by keeping Lia alive for another 23 years, to the present day. Despite the fact that Lia's plig, or soul is missing, (or she's in a persistent vegetative state), she is still an honored child. Her brain damage had "cured" her epilepsy, but Foua and Kao believed that her damage was their fault for some sin. To try to make up for their sin, they treat Lia like a princess, valued above all their other children.
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Spirit Catches You and You Fall Down by Anne Fadiman is a groundbreaking book about cross-cultural communication in health care. The book is about Lia Lee, who was the first in her Hmong family to be born in the United States. Her parents spoke no English. When Lia Lee was three months old, she had her first seizure. Due to misdiagnosis, a string of unfortunate events prevented Lia Lee from
The family would certainly have been more comfortable if the hospital made more of an effort to understand their culture and beliefs. The Lees were treated as if they were indignant and unresponsive to the needs of their child which was not the case at all. The hospital could have enlisted the help of affluent Hmong natives who have become more accustomed to American traditions. This person could have helped
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