Perspective
Amy
By Kathie Culhane-Pera, M.D.
A child’s brief life brings a physician into the fold of her family and traditional Hmong medicine.
I awoke one morning to a message that Amy, my 15-month-old Hmong patient, had been admitted to the pediatric unit of our community hospital. When I arrived, I found her extremely sick—feverish, quiet, pale—and her young parents extremely worried. They didn’t express their worry as anger toward the doctors, junior resident, and nurses who had admitted her the night before, poked her repeatedly with needles to obtain her blood, threaded a catheter to get her urine, held her tightly while taking fluid from her spine, and started the intravenous fluids and antibiotics. They didn’t communicate concern that the doctors were trying to harm their child, as so many of my other Hmong parents had done. They didn’t say they wanted traditional Hmong treatments before allowing doctors to proceed, as some of my patients’ families had insisted on. They were just quietly anxious.
After examining the test results and talking with the family practice team and pediatrician who had admitted Amy, I explained to her parents that she had bacterial meningitis, which would improve with antibiotics. I didn’t mention the low white blood cell count, however; although concerned about it, I didn’t believe it was life-threatening. Fear showed in the parents’ eyes and in their tense bodies. But I, in my doctor role, didn’t dwell on their fear, didn’t allow their concerns to touch my inner core, where their fears could fuel my own. No, antibiotics are powerful. She will be well; her loving parents will hold their bubbly toddler again.
During my morning clinic, concerns about my other patients filled my family doctor head. Lunch time arrived, and I went to check on Amy. As I climbed the back stairwell, I heard the words “Code Blue, Pediatrics” over the loudspeaker. Could it be Amy? No, not Amy. Someone else, surely. Someone else’s patient, surely. Still, fear penetrated my heart. I ran.
Bursting onto the ward, I saw Amy’s extended family gathered outside her door. My fears confirmed, I touched one or two people as I ran past them, not wanting to stop, not wanting to see the fear on their faces but wanting to see Amy, to help her. The code team was working, noisily, frantically. I jumped into the fight, interpreting rhythm strips, agreeing with medicines, fluids, and ambu-bag rates and compression pressures. I threw myself into each task, hoping to save Amy, to keep her alive. When I glanced up, I saw a security guard preventing Amy’s family from entering the room.
I switched my focus. Amy was in good hands, but my other patients—her mother, father, grandparents, aunts, and uncles—were not. I went to them, explaining briefly about the resuscitation. I wanted to reassure them but may have sounded panicked instead. They asked to see Amy. Yes, my heart cried out. But I heard my doctor voice quietly reply, “Yes, you may enter with me. We’ll just have to stand back and not interfere.” I thought maybe they could save her. Maybe she would feel their presence, their love, and return.
I explained what the team was doing, but they didn’t hear me, I am sure of it, for they looked only at the tiny girl in the bed, their faces filled with disbelief, anguish, and desire.
The team worked for a while longer—how long, I can’t remember. Amy’s heart didn’t respond. Ultimately, I had to “call it,” call it off, call it done, call it unsuccessful. Stop the frantic actions. Clean up the mess. Let Amy be a toddler again, without tubes. Let the parents come in again. To hold Amy. To weep.
And weep they did. They wailed. Each family member cried and cried, and wiped their tears as they sang their individual songs of grief:
“You’re my daughter, the only daughter I will ever love. I am your Mother. How will I live without you?”
“I am your Father. My world has ended now that you’re gone. What will I tell your older brother who adores you?”
“My sweet granddaughter has left this world before I have, while I am old and ready to leave. How can I live, knowing that you have gone to the next world before me? When will I see you again?”
Each voice found its own words and sang its own notes, lifting high and low, pausing for breath. Each person’s song intertwined with the others; a cacophony of noise becoming a symphony of grief. A few people held each other; some reached out to touch her. But mostly they stood next to each other, forming a wall of bodies around her bed. I stood in the doorway and prevented anyone from disturbing them, or from disturbing me as I wept quietly.
I expected some family members to lash out at me, to blame me. I had promised, hadn’t I? And I had broken my promise. But no one did. And slowly they left Amy’s side, staggering down the hallway together.
The same little body was lying in a casket at a Hmong Christian funeral home, now with red cheeks instead of the pale bloodless face of a few days ago and in a pretty pink dress instead of a white patternless hospital gown. The junior resident who had done the septic work-up and I had come to see her—to feel our sadness, to grieve with the family members, to heal our wounds with the love that others would give Amy.
We found welcoming arms and solace. Amy’s mother’s brother stayed with us and guided us through the crowd of people. Standing at the casket, we watched people touch her face, her hands, her body, and cry quietly.
Two elderly Hmong women were speaking in hushed tones to Amy’s mother, their harsh, stern looks and critical tones oddly mixed with loving gestures. Later, a family member told us they were asking about what happened.
“Why did you let the doctors kill her?”
“Why did you let them draw her blood, and take fluid from her back, and give her medicines?”
“Why didn’t you bring her to us? We could have cured her. We can cure ua qoob. We know how to be careful and not make qoob get worse and become phiv mob.”
“Don’t you know that doctors don’t know about ua qoob and phiv mob? They are ignorant. They wanted to harm her, kill her, and they did. Doctors have done that to Hmong children. Don’t you know?”
If I had understood what they were saying, how would I have responded? Would I have told them that we doctors do know what’s best? Would I have kept quiet, accepting their judgment? Or would I have admitted that there is so much about bodies, diseases, souls, life, and death that we don’t know? I chastised myself for my arrogance, for my failure to interpret the low white blood cell count as dangerous, and to order some other therapy that may have cured her. But would these elderly healers have done better? Would they have saved her? If antibiotics and intravenous fluids and crash-cart medicines couldn’t save her, surely their ritual khawv koob couldn’t have made any difference. Still, I wondered, and I wished it had been done so there would be no lingering doubts in anyone’s mind.
Years later, when my own daughter Megan had chicken pox—qhua dej, one type of qoob—I took her to a Hmong healer to do khawv koob. Why? Because I wanted to see if it would lessen my daughter’s suffering from the pox lesions that covered her little body? To see if the Hmong know something doctors don’t? To better understand the Hmong culture? Or to once again connect with Amy and her parents’ grief? Perhaps for all of those reasons. But certainly more because I am a mother than because I am a physician. MM
Kathie Culhane-Pera is a family physician and an anthropologist. She is associate medical director at West Side Community Health Services in St. Paul. Culhane-Pera has worked with the Hmong community for 25 years and co-edited the book of stories and commentaries, Healing by Heart: Clinical and Ethical Case Stories of Hmong Families and Western Providers.