The Spirit Catches You and You Fall Down: Chapter 5 Summary & Analysis

Lia continued to have frequent seizures, many of them violent and dangerous. When she convulsed without regaining consciousness, she entered a state known as “status epilepticus,” a condition of constant seizing that greatly compromised her oxygen intake, thereby threatening her life and brain functions. When this was the case, she would continue to seize until doctors injected large amounts of anticonvulsants into her bloodstream. The doctors at MCMC came to fear Lia’s arrival, for they knew that every minute she continued to convulse while in status epilepticus was harming her brain.

As Lia’s trips to MCMC became more frequent, her primary pediatricians, Neil Ernst and Peggy Philp (a married couple) came to know her and her parents very well. Neil and Peggy were highly respected in the medical community as intelligent, calm, and thorough doctors, and Fadiman made much use of them while writing this book, often interviewing them and going over Lia’s medical records with them. During one hospital visit, Nao Kao went home to get some sleep and returned to find that Lia had fallen out of her crib and bumped her head, an event that infuriated him and made him even more suspicious of the hospital and its ability to heal his daughter. Still, the Lees continued to dutifully take her to MCMC, where, once she stopped convulsing, she often displayed extraordinary amounts of energy, tirelessly annoying the nursing staff with her rambunctiousness and distaste for swallowing medications.

Lia’s medication regimen began to prove difficult for the Lees to follow. Peggy Philp originally prescribed an anticonvulsant called Dilantin, then changed to phenobarbital, then decided to try using both at once, on top of which other neurologists prescribed Tegretol (to be used first with both the Dilantin and phenobarbital, then only with the phenobarbital) and Depakene (to be used alone)—in just four and a half short years, Nao Kao and Foua had been told to give their daughter 14 different medications at various times and in fluctuating combinations. This proved difficult, since they remained unable to speak or understand both verbal and written English and thus found themselves hard-pressed to follow the complicated instructions each medication bore.

After raising Lia’s phenobarbital dosage and seeing that blood tests reflected the same lack of the medication she had noticed before changing the dosage, Peggy began to understand that Foua and Nao Kao weren’t administering the drug properly. Whether or not this was because the parents didn’t understand or because they didn’t want to give Lia the prescribed medications, she remained unsure. Both she and Neil were becoming frustrated with the level of miscommunication between them and the Lees and started wondering if perhaps Foua and Nao Kao were intentionally deceiving them by acting more ignorant than they actually were. Neil told Fadiman in retrospect that it felt as if Nao Kao “put up a ‘stone wall’ and was sometimes deliberately deceitful.” Peggy also confided to her that she felt Foua “was ‘either very stupid or a loonybird’ because her answers, even on those occasions when they were accurately translated, often didn’t make sense.”

The Merced County Health Department started sending nurses to Nao Kao and Foua’s home in order to make sure Lia was taking the correct amounts of medication. These nurses tried diligently to instruct the Lees but were ultimately unsuccessful, as Lia’s blood levels continued to show deficits of the prescribed drugs. Cooperation began to emerge in the nurses’ notes as a clear issue, as Foua and Nao Kao insisted that the medications had undesirable side effects on their daughter. Eventually, one of the nurses noted: “Father had become more and more reluctant to give medications at all because he feels that the medicines are causing the seizures and also the fever.” In keeping with this, Foua told Dan Murphy one night at MCMC that she “didn’t think you should ever have to give a medicine forever.”

Lia continued to have serious seizures and her parents maintained their skepticism of the prescribed medications. Peggy Philp noted in an Ambulatory Care Physicians’ Report that Lia “had ‘no words (altho used to say sev. words),’” and posited that it was possible the child suffered from developmental delay. She and Neil—though not surprised—were upset by this conclusion because they wholeheartedly believed it could have been avoided if Nao Kao and Foua had properly administered Lia’s medications. Despite the fact that these two doctors had chosen MCMC—a teaching hospital that catered to underserved populations—in order to give back to those who were less fortunate, they found themselves deeply frustrated by this impossible case, feeling that the Lees’ cycle of noncompliance was never-ending. When he found a double dose of Tegretol in Lia’s blood (Foua and Nao Kao had decided they liked Tegretol), Neil wrote a letter to Child Protective Services, advising them to place Lia in foster care.