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Medical Care Without Understanding

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This is Phillip Periman in Amarillo speaking about the HPPR Reader’s Book Club This spring we are reading Anne Fadiman’s non-fiction, narrative story of the cross-cultural conflict between western medicine and a Hmong family(the Lees) whose 3 month old daughter, Lia, has a seizure disorder which in their language is called  kow da pays which means The Spirit Catches You and You Fall Down. Fadiman uses this as the title of her book.

With her first seizure, the Lees take baby Lia to the hospital in Merced, California. They do not speak or read English. The hospital does not have an official interpreter; a hospital janitor from Laos spoke a bit of Hmong, but he was either not available or not asked to translate by the doctors. Consequently, the Lees left the hospital after Lia’s treatment with no understanding of what had been done nor what they were supposed to do with the medicines the family practice residents had prescribed. They could not read the labels on the bottles. I

n fact, the Lee’s weren’t sure the medicine wasn’t making things worse. Over the next few months and years Lia would become a frequent visitor to the hospital and its clinics because of her recurring seizures. By the age of four she would have had 17 hospital visits and over 100 clinic visits. The medical personnel caring for Lia because frustrated and then helpless or resigned to not being able to control the child’s seizures. No one in the medical world seemed to realize that the Lees did not understand what the medicines were, what they were supposed to do, nor how and when to administer them. No medical person had gained any understanding of Hmong culture and belief about the evil spirit origin of Lia’s seizures. All the doctors and nurses were trying to provide the very best in modern medical care to a patient, a family, and a community that lacked any understanding and in fact ascribed illness to a spiritual rather than a physical abnormality.

Fadiman does a splendid job of ferreting out of the medical records the frustrations of the medical community. Dr. Neil Ernest, an outstanding pediatrician at the Merced Hospital documented in the clinic notes how Lia’s mother declined to administer Dilantin, but did increase the phenobarbitol dose, but did not use the Tegretol, a standard medicine for a child with seizures. Years later on re-reading his medical notes, Ernest told Fadiman that he could not remember another case that had upset him so much. His wife, Peggy Philip, also a pediatrician said, “I remember wanting to shake the parents so that they would understand.” Twice they had Child Protective Services remove Lia from her home because the parents were not giving her medicines as prescribed. This, of course, distressed her family. Eventually with the help of an understanding social worker, Lia left foster care and returned to her family. All the westerns were impressed with the incredible love and care given to Lia. Unbeknownst to them the Lee’s considered Lia an especially blessed child---having seizures was a mark of distinction.

Then came the big one: November 1986 Lia had a grand mal seizure. At the hospital the doctors desperately tried all remedies to stop her seizures. A twenty minute seizure is considered life-threatening; Lia’s lasted for two hours in spite of figuratively gallons of medicines. Eventually they did stop, but because of the severity and the lack of an ICU for kids in Merced, Lia was transferred to Fresno. This had been her 16th admission. Unfortunately, after the complicated process necessary to stop her seizures, Lia developed an infection in her blood which led to septic shock and the shutting down of her organs---a vegetative state. She was admitted a 17th time to the Merced Hospital where the physicians felt that Lia would never recover. They were prepared for Lia to die. Her family made it clear that they were willing to take her home which they did. Twenty-six years later all of it spent in a largely unresponsive condition Lia died at age 30.

This has been Phillip Periman in Amarillo for the readers book club.