Where is Lia today?

I’ve spent some time today trying to answer the question “What happened to Lia Lee?” without a lot of success.  I’m not sure why I feel it is so important to find out the ultimate fate of a young Hmong girl who became brain-dead in 1986.

Earlier this summer my daughter suggested that our book club read “The Spirit Catches You and You Fall Down” by Anne Fadiman.  It was required reading for her as she entered a 3-year nurse practitioner program at Columbia.

The book chronicles the clash of two cultures with the focus on an epileptic Hmong child Lia living in Merced, California.  The author skillfully avoids taking sides in what was a 5-year nightmare between Lia’s family and the medical community in their town.  

At just 3 months Lia has her first seizure and is carried by her parents to the hospital just 3 blocks from their house.  Their inability to speak English results in not getting a proper diagnosis of epilepsy until the third such incident.  

The family is convinced Lia’s condition was been brought on by her sister Yer slamming the door and scaring Lia’s soul out of her body.  Furthermore, Lia’s diagnosis in their mind gives her a “special” place in Hmong society, wherein epileptics often become shamans.

During the first few years of her life, Lia’s medications are changed 23 times and her parents seem unable or unwilling to administer them properly, resulting in her placement in foster care for a year.

Lia’s doctors continue to struggle with her condition and to the best of their ability give her the proper treatment.  Their efforts are often hindered by a lack of communication or  their lack of understanding of the traditional Hmong approach to healing, where the soul must be healed before the body can be.

At the age of 5 Lia suffers the ultimate seizure and while in the hospital contracts a septic infection that the doctors are convinced will result in Lia’s death.  They allow her parents to take her home to die, but she doesn’t die.  Instead, her temperature returns to normal, she learns to swallow once again, and she quits having seizures.  Without the aid of western medicine, her parents feed and care for her in their home.  It was two years after this point in time that the author came on the scene and wrote the book.

So we are left not knowing what happens to Lia.  I consulted Google, to find a statement from one of her sisters in 1997 indicating that she was still alive.  She would have been 16 years old at that point.  Today she would be 29. 

I got into one of my determined moods today and started digging.  I found that the author now lives in a small town in western Massachusetts and could not come up with a current phone number for her.  I tried to consult someone in the Hmong community in Merced, but the person I called didn’t speak English.  My latest call was to someone in the Merced Public Library, who knew of the book but hadn’t read it.  Ironically Lia’s primary pediatrician had been her child’s doctor as well.  She seemed interested to try to get an answer for me, but I’m still awaiting her call.

This book should be required reading for anyone in the medical profession.  It’s also a good read for anyone who lives in a culturally diverse area with a lot of immigrants.  Besides learning about the long and somewhat sad history of the Hmong people, I learned how a family’s love is sometimes the only medicine that works.