Thursday 8 November 2012

The Spirit Catches You and You Fall Down - Learning from Tragedy

I had to dry my tears and compose myself before beginning this post.   It was a book that had made me cry - "The Spirit Catches You and You Fall Down" by Anne Fadiman.

This is a story about a Laotian family of refugees in California whose daughter, Lia, had severe epilepsy and developmental delays as a result of Lennox-Gastaut syndrome.  What happened to Lia and her family is a tragic litany of cultural misunderstandings together with the struggle for power over the care of this very complex child.  Lia's family belong to the Hmong group of Laotian people.   This is how they referred to their daughter's devastating epilepsy, "1982 was "the year the spirit first caught Lia and she fell down": 1985 was the "the year Lia became government property."

Lia's family do not speak English, nor could they understand the doctors' complex and ever-changing regime of anti-convulsant drugs.  When Lia's parents believed that the drugs made their daughter worse (which they often did), they simply stopped giving the medication and brought her to a traditional Hmong shaman healer instead.  No one ever contested that Lia's parents loved her or that they doted on her care in every way.  In fact, medical professionals considered Lia spoiled, but that did not stop her doctors charging the parents with non-compliance in her drugs regime and placing Lia in foster care.

Dee Korda was the foster mother who cared for Lia during this sad time.  Dee came to love Lia and her family, even leaving her own new baby in Lia's parents' care while she brought Lia to medical appointments.  Dee Korda and her family never doubted that Lia was placed in foster care as a result of flawed judgement and cross-cultural misunderstanding.  She once said, "Lia knew how to love and how to let people love her."  When Lia suffered toxic shock that rendered her effectively brain dead, the author remarked, "Whatever else she had lost, Lia still knew how to be loved."

Many parents I know and name as friends have been charged with non-compliance in cases of Lennox-Gastaut syndrome, the same illness that befell Lia.  Medication regimes are difficult to follow and the erratic comings and goings of seizures confounds the best doctors and scientists.  In fact, when Lia was removed from her family home and given over to the care of Dee Korda who administered multiple medications according to physician's orders, Lia's seizures became worse.  The sad story of Lia Lee is one of dedicated and talented physicians who had no training or skills in breaking down language or cultural differences in order to work in a collegial fashion with Lia's family.

In 2004, Nicholas was in a great deal of pain.  Two hip surgeries to rebuild a dislocated hip had not prevented his hip to become dislocated again and we were advised to remove the ball of the femur altogether.  This surgical procedure seemed dreadful, but we accepted that it was our only choice, so we agreed to it.  Afterwards, when Nick's femur migrated upwards into the pelvic bone, we tried multiple, permanent nerve blocks, but they caused secondary nerve damage and pain in Nick's right foot.  Trying to find a safe dose of morphine or other strong painkiller was nearly impossible, especially when Nick was screaming at 3am.  Often, the hospital anaesthetist on call would simply say "I don't do pain", or "I'm in the middle of a surgery, this is too complicated" and they would hang up before I could reply.

 Then this happened:  (from my book, The Four Walls of My Freedom)

"What is it?"  My social worker looked distraught.  The nurse said that a child protection change had been laid against me.  There would be an investigation into the allegation that I had overmedicated Nicholas, and that because I had indicated extreme levels of of stress and exhaustion, I was possibly trying to harm Nicholas.  At the very least, I had given extra morphine without a prescription and potentially put his life in danger.  I was incredulous, but at that point, I didn't comprehend the full implications of this turn of events.  Then I was told that I could not be in the room with Nicholas.  Easter weekend was coming up and Nicholas could not come home for a hospital weekend pass.  I was being investigated as a mother who wanted to harm, if not kill, her child.  A sense of dread, fear and helplessness oozed its way into my thoughts and dreams.  I worried constantly that they might take not only Nick, but Natalie away from us.  It was ironic, I thought, that my greatest fear had been Nick dying." 

In the community of parents giving complex care to their child, there is a high percentage labeled abusive at worse or non-compliant at best.  I am not a Laotian refugee and english is my first language.  Still, when my usually excellent relations with Nicholas' medical professionals took a bad turn, I believe it was on account of cultural misunderstanding.  The language that I did not understand was medical, administrative and prescriptive.  My language was cultural, intuitive and very responsive to a situation that was painful and chaotic.  In my next post, I will write about the inspirational lessons I learned for my own family and others who are working toward consensus with medical professionals in their child's life.


Julie said...

Donna, this is terrifying. I have not other word for it. I can't imagine being in such position and the absolute helplessness of it all. It is hard to read your accout, but thank you for sharing.

cj/mother's heart said...

I'm with Julie, this is the terror of terrors for we parents, except part of the terror for me has been that I CAN imagine being in such a position. Remembering when you and Nick were going through those times, trying to deal with all his pain and admiring from afar your focused attention to finding the solution to his agony; and now knowing you were dealing with this kind of travesty also, well......cuts to my heart and saddens me so. I"m sorry you had to learn the lessons that way. I know that means the lessons are undoubtedly deep and valuable ones.

Julie said...

What you have described is my deepest fear......I fear it more than death. We had a taste of that in 2004 when a social worker told me that "her superiors were concerned that we were not coping at home as we had been admitted yet again to the hospital.It turned out our daughter has a bowel obstruction although she was brushed off as being "irritable" due to her brain injury. To this day (9 years later), the mere thought of that moment when I was threatened as a mother, has stayed with me and is just as frightening.

Allie Axel said...

My friend has been suggesting this book to me for months now. Your description of the story and the identification you experienced while reading it is both beautiful and heartbreaking.

Sylvia Phillips said...

This book was on the recommended reading list for a class I took. My daughter suffers from an untreatable, uncontrollable, and unpredictable seizure disorder due to having had brain cancer. She is not a candidate for surgery as she has numerous focal points that if messed with would make her problems even worse.

Sylvia Phillips said...

Oh my goodness! I wrote my first reply before finishing reading your post! What happened is so awful, yet all too common. We have been through "misunderstandings" but thankfully things never went so far as to have cps called! My heart goes out to you!

BLOOM - Parenting Kids With Disabilities said...

Hi Donna -- The Spirit Catches You... is one of my all-time favourite books. This issue of parents being perceived as hurting their children when they are doing the absolute best they can in a horrendous situation came to my attention recently when a mom told me about child authority involvement when her child had bruises that were self-inflicted due to anxiety. Thank you for sharing your story -- perhaps sometime we can do a story about how parents can be accused of hurting their children when they are most desperate to help them.

The Caregivers' Living Room said...

Hi Louise, A story on this topic would be timely and important, I think. I know many families who have run into problems with child protection about bruises caused by falls on account of ataxia or self-injuring behaviours. I know two families with children who have the same condition as Lia Lee in the book (Lennox-Gastaut syndrome) who have been investigated after difficult issues of compliance. There are many parents who can tell sad stories of being investigated for Munchausen by Proxy before their child was diagnosed with a rare disorder. It's all very difficult and I'm sure the medical professionals find it nearly impossible to identify the ethical interventions in such complicated cases. I feel for them too!