This is possibly the saddest story I’ve ever read.
It’s a true story, about a girl with epilepsy.
Her family were refugees from Laos and spoke no English, and their specific language is relatively obscurely so at the beginning of their ordeal, there were no translators for them in the area, which meant they could not communicate with the doctors who treated little Lia.
Result: her epilepsy went undiagnosed for quite some time.
From there, it went to hell. They put her on a bunch of medication, changing them frequently to try to control the seizures. It took them a LONG time to realize that the parents were unable or unwilling to give her the medication at home.
To be clear, they didn’t want to give her all those medications, feeling (correctly) that the side effects were severe and feeling (incorrectly) that probably she didn’t need that much medicine anyway.
However, even if they were willing to be perfectly compliant with the medications, they had a massive issue: they didn’t speak or read English. She was just a baby, so the medications were liquid in some cases, but pills in other cases, which had to be divided into segments to get the right dose, then ground up and put into food which the baby objected to. It was virtually impossible. They couldn’t tell the bottles apart, they couldn’t figure out when each med was supposed to be given, it was a disaster.
Finally, they sent a home health nurse to the house. The nurse and the social worker tried everything they could to get it to work, including taping up samples of each med on the wall with a drawing of when it was supposed to be given to the baby. But it didn’t work.
Eventually, in a desperate bid to get the baby the medication that she needed, the doctor asked for the child to be removed from their care and put into foster care, which the state did.
This trauma was, obviously, severe for the family, who didn’t understand what was happening. By the end of the ten months the baby spent in foster care, they had reduced her medications to a single one and convinced the parents of the urgency to give her that med as directed every single day. And so, the baby was returned to their care.
But then she had the worst seizure of her life. It wouldn’t stop. Even after the ambulance got her to the ER, they couldn’t stop it. It just went on and on as they tried to get an IV in and shoved medication into her little body, and tried to get a breathing tube in because she wasn’t getting any oxygen. It was a disaster. The poor little baby.
When they got her stabilized, they moved her to the children’s hospital, but the lack of oxygen had left her brain dead. She was a vegetable.
It got worse from there, of course.
The author also talks in depth about the Hmong people and their history, which is a segment of history that I knew nothing about, and I would assume most people probably know nothing about. It makes you angry, when you think of it. We used them as proxy soldiers in Laos during the Vietnam war, because we were banned by treaty from putting our own men on the ground in Laos. We paid them practically nothing, we force recruited them, and we let them die in huge numbers (five TIMES the fatality rate of American soldiers in Vietnam) and promised them they could come to America if Laos became inhospitable for them afterwards.
Laos DID become dangerous for the Hmong. We took out the officers and their families, and left the rest of the Hmong to be hunted. They crossed through to Thailand, many starving to death or being killed by their enemies. Once in Thailand, they were held in refugee camps for long periods and only gradually allowed to come here. And once here, they had no resources set up to ease the transition. No English language classes, no cultural classes. The resources provided by private companies and organizations were woefully inadequate.
It’s all incredibly sad. The author says at the end that since the events of the book (mid 1980s) the next generation is adapting well and assimilating to America well enough to get good educations and good jobs, which helps ease the blow a bit.