Foua Yang crumpled in tears on the staircase in her south Sacramento home, just feet from the empty hospital bed where her daughter Lia Lee lived most of her life.
“I’m deeply saddened that Lia’s no longer of this world, I love her very much,” said Yang, clutching a picture of Ms. Lee as a lively 4-year-old in traditional Hmong finery, running from her mother.
Ms. Lee — who in July celebrated her 30th birthday in that bed, surrounded by her mother, brother, seven sisters and numerous nieces, nephews and cousins — died Aug. 31 after a lifelong battle against epilepsy, cerebral palsy, pneumonia and sepsis, a toxic reaction to constant infection.
Her family’s struggles with hospitals, doctors and social workers were chronicled in Anne Fadiman’s best-selling 1997 book, “The Spirit Catches You and You Fall Down,” which altered Americans’ views on cross-cultural medical treatment. She became a symbol for disabled children and immigrants intimidated and confused by Western medicine.
At 4-foot-7 and 47 pounds, Ms. Lee could speak only with her eyes and her cries. Stricken by seizures since she was a few months old, she battled through, singing Hmong folk songs and joyfully running around her neighborhood. At 4, she suffered a grand mal seizure that stole her speech and her ability to move.
“Even though she’s never spoken a word since the grand mal seizure, Lia taught a lot of doctors and nurses to care for people from other cultures more sensitively,” Fadiman said. Medical schools and universities use Fadiman’s book, and shamans are allowed to practice in California hospitals.
Doctors had predicted Ms. Lee’s imminent death after her seizure, and her parents took her home from the hospital to die. But when her parents removed her feeding tube, Ms. Lee cried out. Her sister Mai Lee, 32, said Ms. Lee’s strong will to live, nurtured by her family’s love, faith and constant care, proved the doctors wrong.
“Lia’s legacy is to give families with sick children the strength and courage to question their doctors,” Mai Lee said. “We didn’t ask those questions.”
Ms. Lee’s primary doctors, Neil Ernst and Peggy Philp, said the girl and her family profoundly changed medicine. “Lia’s a game changer,” Ernst said. “She’s altered so many people’s approaches to dealing with patients with different beliefs.”
Philp added, “We saw her life ending when she was 5, but her mother’s unconditional love taught me the value of life.”
The book details the family’s odyssey. Ms. Lee’s parents, Yang and Nao Kao Lee, fled their mountain village after Laos fell to the communists in 1975. After years in Thai refugee camps, they were resettled in Merced, Calif., in 1980, and moved to Sacramento in 1996.
Ms. Lee was born July 19, 1982. The day before Thanksgiving in 1986, she suffered her near-fatal seizure at the family’s kitchen table.
Her father declared, “When the spirit catches you, you fall down,” meaning a powerful spirit was locked inside her body, Mai Lee said. Ms. Lee was rushed to the hospital for the 16th time.
Her seizure lasted two hours. Her temperature rose to 104.9. Her blood pressure plunged. Her flailing hands turned blue. She was rushed to a hospital in Fresno, Calif., where doctors declared her brain-dead.
The family looked for a funeral home and prepared Ms. Lee’s funeral clothes for her journey through the spirit world.But when family members removed the tubes, Ms. Lee’s cries convinced them that she was not ready to die.
Her parents, like most traditional Hmong, believe in ancestor spirits. They asked a shaman to travel to the highest level in the spirit world and strike a bargain: “Give us our daughter’s life, and we’ll give you a life in exchange.” They sacrificed a pig and got their wish, said their oldest daughter, Zoua Lee, 48.
But because of language and cultural differences, the family had trouble administering her medicine, and she spent a year in foster care. Fadiman said there are no villains here — that both the Lee family and the doctors had the best intentions.
Ms. Lee was the center of every family ceremony, every birthday, smiling with her eyes and even giggling occasionally. Every day, her mother and sisters would talk to her, feed her, hold her and caress her. Over her bed, there is a photo of her father, who died in 2003.
“It’s extraordinary she survived so long in a vegetative state,” Fadiman said. “It’s a testimony to the exceptional loving care her family gave her.”
— Sacramento Bee