Chapter 5 - Take As Directed

Between the ages of eight months and four and a half years, Lia was admitted to MCMC seventeen times and made more than one hundred out patient visits to the ER and the Family Practice Center. Foua and Nao Kao knew when a seizure was coming on, because Lia knew. The aura, a sense of premonition common to all epileptics, could be seen in Lia in a strange, scared expression, and they would pick her up and gently lay her down on a mattress in the living room, placed there just for that purpose. Sometimes there would just be twitching, staring spells, or hallucinations. However, more and more often Lia would experience a grand mal seizure which involved rigid muscle contractions and thrashing. This would affect her lungs and cause her mouth and nail beds to turn blue. Sometimes, she would gasp, foam at the mouth, vomit, urinate or even defecate. This is what the doctors at the ER feared most - “status epilepticus.” It demanded massive amounts of anticonvulsant medications administered intravenously. It was difficult to insert the needle on Lia and the longer it took, the more her brain was being deprived of oxygen. Because she was there so often, there was no group of family practice residents in the US who, by the end of their three-year program, were so familiar with the management of pediatric grand mal seizures.

Peggy Philp was the physician whom Dan Murphy consulted after Lia’s first admission to the ER. She and her husband, Neil, were the physicians who served on the faculty of the family practice residency program and soon came to care for Lia at any hour of the day or night. She wrote in Lia’s chart that it was worthwhile to keep her on Dilantin therapy to suppress the grand mal and that this treatment should help insure Lia’s intellectual development. All seemed optimistic at the time, but Lia’s chart eventually grew to five volumes. Looking back on the earliest entries years later, Peggy would wonder whether the course of Lia’s life might have changed if the hospital had offered her optimal treatment right from the beginning. As a husband and wife team, they had come to Merced to help people who needed better services than they could afford. They were always though of as “Neil apostrophe n apostrophe Peggy,” because they worked to well together. Few other people could have gone to the lengths they did to provide good medical care to Lia.

Lia’s other problem which contributed to her epilepsy problems was her obesity. It made intravenous access difficult and threatened her life, as a result. However, her father especially liked her fat, because a plump Hmong child was perceived as healthy and especially well cared for. To add to the difficulty caused by her weight, when a vein was finally found to hold up for any length of time, it was important that Lia move as little as possible. Unfortunately, Foua and Nao Kao would pick her up or untie her hands and allow her to sleep beside them. They saw the doctors who insisted she be tied as unnecessarily sadistic. The nurses eventually responded to the parents moving their child by rigging a net over her bed and caging her out of their reach. “It took all the autonomy of a being a parent away, even for folks who have had a lot of medical experience. It would be that much harder if you were from another culture and didn’t understand the purpose of these things.”

Then came another problem - Lia’s far from commendable behavior. The nurses prayed when they heard she was in the ER that she wouldn’t be admitted. However, she usually was admitted and then, when she began to feel well, she would become the horror of the floor. She was a little Houdini who could get out of any restraint and her attention span was quite short. She was physically demonstrative and constantly demanded hugs, and she was bold without fear of anyone. She also hated swallowing her medications and often had to be restrained physically to force it down her throat. This was all utterly confounding to the Lees as well.

The greatest problem, for both the Lees and the hospital, was Lia’s medication. Most of the time, she was on a combination of Phenobarbital, Dilantin, Tegretol, and Depakene along with antibiotics, antihistamines, and bronchodilating drugs. By the time she was four, she had changed prescriptions 23 times. Add to this the fact that Foua and Nao Kao were illiterate in both English and Hmong, so they often forgot what the doctors told them. The doctors never assumed anything other than that the Lees would give Lia her medicines properly, but time soon proved that Lia’s mother especially was either confused or lying about how she administered the medicines. The doctors were even more confused, because to determine if the medicines were working correctly, it was necessary to observe their levels in Lia’s blood. However, these were inconclusive, because there was no way to know if her seizures were caused by too much or too little of the medication in her system. For Peggy and Neil, Nao Kao was a stone wall and seemed deliberately deceitful while Foua was a “looney bird,” because her answers usually made no sense. Neil said it felt as if there was a thin layer of Saran Wrap in between the doctors and Lia’s parents.

One solution to these problems was to send a nurse to the Lees’ home along with a Hmong interpreter to help with Lia’s medication regimen. Unfortunately, it became a series of nurses, because they all burned out. As for the Lees, the doctors got the general impression that they really felt the medical staff was an intrusion and if they could just do what they thought was best for their own child, that child would be fine. The nurses did soon come to the realization that the Lees were non-compliant, because they didn’t understand the instructions and they also didn’t want to give the drugs. They had come to the conclusion that the medicines were causing the seizures and also Lia’s fever. The doctors found they could not take for granted the attitude that they were prescribing this medicine in good faith and had no intention of hurting Lia. They had to understand that if they pushed their western ideas too hard, they risked running up against the stubborn strain in the Hmong character that for thousands of years had preferred death to surrender. The key was to find a way to allow the parents to back down without loss of face.

One night while Lia was in the ER for the umpteenth time, Dan Murphy questioned her parents about the anticonvulsant medication. He discovered that Foua didn’t think you should take a medicine forever and stopped it altogether. Dan felt some sympathy for them, because he believed they believed they were doing what was right for their children. He said, “I remember having a little bit of awe at how differently we looked at the world. “ The Lees looked at the world as one that was not always in their control, while Western medicine was determined to find a way to achieve that control. On January 20, 1984, Dan Murphy ended up dealing with the worst grand mal seizure Lia had ever had and that he had ever had to deal with. It was the result of Foua and Nao Kao discontinuing all medications three months before. He had to administer three massive doses of Phenobarbital before getting the seizure under control and then that inhibited her breathing so he had to intubate her. Then, she had to be transported to another hospital, because MCMC was not equipped with a respirator for babies. The admitting resident was told through translation confusing information and noted in Lia’s chart that he was not entirely sure if all her history was reliable.

Two months later, Peggy noted in her report that a conclusion she had been dreading for some time may be coming to pass - Lia was a victim of developmental delay. She was showing a regression in the number of words she used, and they saw a steady decrease in intellectual capacity if the parents didn’t begin to follow directions in administering Lia’s medications. Of course, Peggy and Neil never visited Lia at home and the visiting nurses saw a completely different child at home. Unfortunately, testing her intelligence was difficult, because of her hyperactivity. Then, when Lia turned two, a consulting neurologist recommended that she be started on Tegretol, continued on Dilantin, and gradually weaned off Phenobarbital, because it was causing her hyperactivity. Just as before, the Lees were non-compliant, both because they didn’t understand and didn’t trust the doctors’ orders. They showed signs of giving one medication in double the amount while not giving the other at all. It was Foua who was the greatest problem and Neil was enraged by her attitude. He was angered by her obstinacy, but both he and Peggy were angrier because of their fear. Add to that the fact that “Lia’s family had never paid a penny for the hundreds of hours of care she received - and yet the Lees failed utterly to appreciate the generosity of Medi-Cal and of Neil and Peggy’s services.” They never showed the same deference that Americans showed their doctors. It was as if all the knowledge the two doctors possessed was utterly meaningless to them. The worst part about it all was the agonizing feeling that any conscientious physician would feel watching Lia fail. However, no matter how frustrated they felt, they never considered abandoning the case.

In June of 1984, Neil and Peggy learned that Foua was pregnant again with her fifteenth child. Her age was unknown, but they had assumed she was past childbearing years. They dreaded how this baby was going to turn out and how much more difficult wit would be for the doctors at MCMC to deal with two sick children. Fortunately, the new baby - a girl named Pang - was born healthy and vigorous, but Foua was totally overwhelmed now what with Lia’s medications and breastfeeding two children. By May 1, 1985, it was clear that the Lees were now refusing the Tegretol in any form whatsoever and later, they even stopped the Phenobarbital. Neil felt he had no choice and referred Lia’s case to the health department and child protective services. He recommended she be placed in a foster home so that compliance of medications could be obtained. The Superior Court of the State of California immediately acted on his request and declared that Lia should be removed from the custody of her parents.

Notes

This chapter documents the constant problems that existed between the Lees and the medical staff at MCMC over Lia’s medication regimen. Both sides obviously care deeply for the little girl, but the loss of her life is a great possibility when Neil Philip steps in and says enough.