The epileptic child whose tragic story illustrates the cultural divide between the Hmong and the American medical systems. Lia was the fourteenth child of Foua Yang and Nao Kao Lee and arguably their favorite. They spoiled her and treated her like a princess, believing that her epilepsy marked her as special and that she might someday become a shaman. Lia's frequent seizures resulted in mental retardation, and she often threw tantrums. At the same time, she was very affectionate and extremely well loved. Her parents had very different ideas from her doctors about the cause and optimal treatment of Lia's disease. As a result, she was placed in foster care for one year in order to ensure she would receive the recommended medicines. Lia eventually lost brain function as a result of septic shock, possibly brought on by the weakened state of her immune system caused by so much medication. Her family continued to love and care for her in her vegetative state for over twenty-five years.
Foua Yang and Nao Kao Lee
Lia's parents. Originally from Laos, they escaped to Thailand in 1979 due to communist persecution after the Vietnam War. (Although their village had escaped fighting, the Hmong people had helped the CIA to fight the communists and were therefore treated as traitors.) A year later they immigrated to the United States as refugees. Foua and Nao Kao were loving parents of fifteen children, eight of whom survived. They loved Lia very much and did their best to care for her. They believed that Lia's illness had a spiritual origin and therefore needed spiritual treatment (shamanic ritual, or neeb), and that too much medicine could reduce the neeb's effect. This belief put them at odds with Lia's doctors, who did not understand their belief system and insisted upon complete compliance with Lia's medical regimen.
Neil Ernst and Peggy Philp
The two supervising pediatricians on the faculty of the family practice residency program at MCMC. Neil and Peggy are married to each other and share a practice. They did their best to provide optimal medical care to Lia, but they knew little about Hmong culture and never asked the Lees about their beliefs about Lia's illness. Neil and Peggy acknowledged their imperfections and were willing to question their own practices in order to improve the outcomes for their patients. At the same time, they still expected patients to comply with their recommendations and accept that as doctors, they knew what was best. When Foua and Nao Kao failed to correctly administer Lia's complicated medical regimen, Neil had Lia placed in foster care, believing the move to be the only way to ensure that Lia would receive the care she needed.
The book's author and narrator. Fadiman wished to tell Lia Lee's story from the point of view of both her parents and her doctors. She became close friends with the Lees and with many other members of the Hmong community. Through extensive interviewing and copious research, Fadiman explores the reasons for the mistakes made by both sides that eventually led to Lia's demise. She shares the stress and frustration felt by each party and tries to show that each did the best that they knew how, given their cultural backgrounds and understandings.
The Child Protective Services (CPS) caseworker assigned to Lia when she was placed in foster care. Jeanine did her best to educate Foua and Nao Kao so that Lia would be allowed to return home, teaching them how to measure and administer Lia's medication. She developed a close relationship with the family and advocated for them whenever she could. Of Lia's caregivers, she alone had asked the family what they thought was the cause of Lia's illness and what they were doing to try to treat it. Ironically, Jeanine's fate eventually mirrored Lia's, as she suffered an asthma attack so severe that she became brain dead, passing away three days later.
The family practice resident on call the third time the Lees brought Lia to the emergency room at MCMC. He was fascinated by the Hmong, knew a lot about them, and counted a Hmong family among his closest friends. Dan was the first doctor to realize that Lia had epilepsy, as the first two times Foua and Nao Kao brought Lia to the hospital there were no interpreters present and her seizures had already stopped. He often treated her when she came to the emergency room and provided Fadiman with some of the data necessary to reconstruct what had happened at the hospital.
The former chief resident of MCMC and Anne Fadiman's friend, who first told her about the Hmong in Merced and with whom she stayed while conducting her research. Despite the fact that he was anthropologically inclined, had spent two years with the Peace Corps, and respected the need to understand his patients' culture, Bill had trouble connecting with the Hmong, illustrating the difficulty that even open-minded doctors had in understanding and communicating with their Hmong patients. He found them both incredibly interesting and incredibly difficult, due to their frequent noncompliance and taboos against medical procedures. His core beliefs were still aligned with those of the western medical profession, as he believed that saving a child's life was far more important than respecting the family's beliefs about the soul.
A popular doctor among the Hmong in Merced – popular, in part, because he rarely performed surgeries and was happy to give patients their babies' placentas in plastic bags whenever they requested them. His colleagues at MCMC did not hold him in particularly high esteem. However, the Hmong preferred him as he respected their desire to make their own choices about their bodies.
A skilled MCMC obstetrician who respected the wishes of her Hmong patients; in so doing, however, she felt that she was providing them with suboptimal care.
Dee and Tom Korda
Lia's foster parents during the year she was placed in foster care. The couple spoke no Hmong, but they treated Lia with love and tried to comfort her with physical contact. Dee carried Lia in a backpack while she carried her own youngest child on her front; she also let her sleep in her bed, and breastfed her along with her own baby. Foua and Nao Kao visited whenever they could, and the Korda and Lee children became friends. Dee recognized how loving the Lees were and recommended reunification. As an example of the trust she felt for them, she began leaving her own baby with Foua when she took Lia to the doctor. After Lia was returned to her parents, Dee stayed in touch with the family and continued to visit them.
The Hmong interpreter who came to the Lee's home with Child Protective Services (CPS) when Lia was taken from her parents to be placed in foster care. She was unpopular in the community, in part because she had married an American, and in part because she did not behave in a traditionally Hmong way. She once told Nao Kao that she had recommended to CPS that Lia remain in foster care. Nao Kao felt a lot of anger towards her and once nearly hit her with a baseball bat.
The psychologist at Merced Community Outreach Services who introduced Fadiman to five Hmong leaders, thereby paving the way for Fadiman to earn their trust. Sukey was possibly the American most well respected by the Hmong. She taught Fadiman that the best thing to do in terms of etiquette was to ask, rather than trying to follow a long set of rules. She stressed the importance of finding a "cultural broker" to help her communicate with the Hmong.
May Ying Xiong
Fadiman's "cultural broker," who taught her what to do among the Hmong as well as translate what people said. May Ying was a 20-year-old clerk at the Merced County Office of Refugee Services when she began working with Fadiman. Her father was a famous tvix neeb and a soldier who had trained with the CIA. Her age and gender turned out to be an asset, as the Lees felt much more comfortable opening up to people with lower status. It was also fortuitous that her husband belonged to the Lees' clan. As a result, the family was hospitable and talkative, making it possible for Fadiman to conduct her research.
One of Lia's older sisters. May was just three and a half when her family left Laos. She learned English at an American high school and served as interpreter for Jeanine Hilt, Lia's social worker.
Lia's neurologist at Valley Children's Hospital in Fresno, which was better equipped to deal with severe cases of childhood trauma than MCMC. Hutchinson believed that Foua and Nao Kao's lack of compliance with Lia's medical regimen probably had nothing to do with her final seizure. Her brain was destroyed by septic shock, and it was the septic shock that caused the seizures. Ironically, Foua and Nao Kao may have been right that too much medicine was to blame, as it may have been that the Depakene the doctors had prescribed to control Lia's epilepsy compromised her immune system and made her more susceptible to the bacillus which caused the septic shock.
The critical care specialist who treated Lia at Valley Children's Hospital the night of her big seizure.
The medical resident on duty when Lia returned to the MCMC from Valley Children's Hospital after her big seizure and when Nao Kao, perhaps misunderstanding what the doctors were telling him, attempted to leave the hospital with Lia without following the proper discharge procedures. Exhausted and burnt out, he had little patience for engaging in a conversation about cultural differences.
Leader of Hmong forces in Laos with a courageous yet contradictory nature. He was ruthless to his enemies, yet served as a surrogate provider to hundreds of war orphans and widows. He considered himself a modern reformer who supported education, criticized slash-and-burn agriculture, and encouraged assimilation into Lao society, but he also employed tvix neebs and believed in the fortune-telling power of chicken bones. Vang Pao was also an indirect reason that so many Hmong moved to Merced, as Dang Moua, the first Hmong to relocate to the area, came in part because the former general was thinking of buying a fruit ranch nearby.
A public health nurse who made house calls on Lia when she was in her vegetative state. He was politically liberal and an outspoken advocate for the Hmong, writing dozens of letters to the editor castigating readers for their intolerance. He had also strongly disagreed with Neil's decision to place Lia in foster care. Nonetheless, Lia's family viewed him as an authority figure and said little to him. He often offered advice, such as taking Lia's pulse with the help of a watch or giving Lia Metamucil in prune juice, without realizing that the family had very little idea what he was talking about. His experience illustrates that good intentions are not usually enough to bridge the cultural divide between the American medical system and the Hmong.
The first Hmong to relocate to Merced, CA, paving the way for many others to follow. Dang used to live in Richmond, VA, where his family was the only Hmong and where he worked eighteen hours a day at minimum wage jobs. Committed to improving his life, Dang went to the library in his spare time and read about agriculture in other states. He was attracted to the Central Valley of California due to its climate and the presence of many different ethnic groups; he had also heard that General Vang Pao was thinking of buying a fruit ranch near Merced. Based on this information, he moved his family to California, where he found work picking peaches and figs and supplemented his diet by trapping small animals. The favorable news of the region spread, and eventually as many as one in five Merced residents were Hmong. Dang eventually became a grocer and pig farmer and founded California Custom Social Services, an interpreting and liaison agency.
Blia Yao Moua and Jonas Vangay
Two Hmong leaders who taught Fadiman about the Hmong. Blia Yao Moua arranged Fadiman's first meeting with Foua and Nao Kao. Fadiman spent many afternoons in his office, asking questions about Hmong religion, military history, medical practices, weddings, funerals, music, clothing, and other cultural practices. Jonas Vangay, another well-educated Hmong leader, taught Fadiman about Hmong history and linguistics. Both men were stretched thin by their many responsibilities to the community.
A psychiatrist and medical anthropologist, who developed eight questions to articulate a patient's "explanatory model" of their illness. Kleinman's retroactive advice to Lia's doctors was to get rid of the term "compliance," to work with the family rather than trying to coerce them, and to recognize that the culture of biomedicine has its own biases. He believes that combining western medicine with traditional healing arts not only promotes trust between patients and doctors, but also improves the outcome due to the psychosomatic nature of much disease.
An ethnographer who worked at the Ban Vinai refugee camp in Thailand. Conquergood was successful at designing an environmental health program where most others had failed. His secret: live among the Hmong, learn their culture, and create educational campaigns that take into account their cultural beliefs. He considered his relationship with the Hmong to be two-sided, with each party learning from the other. His attitude can be contrasted with that of Lia's doctors, who believed that they alone possessed the relevant knowledge to treat Lia and that the Lees were obligated to comply.
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