I heard someone banging on the metal guest house door in Port-au-Prince and I wandered over to see what was happening. Haitian nights are dark and this night was especially dark. A guard answered the door and let in a man who looked familiar to me but I could not place him in the dark. Behind him, clutching his hand, was a little girl.
He looked at me and said, “Mika is sick.” And with this statement, I suddenly recognized him and his little girl. In the late 90’s, I had first examined Mika in a little hospital in the mountains of southern Haiti. Her father had brought her to me then too. She had a leaky mitral valve and after several months of paperwork, I brought her to Peoria for heart surgery. She had her mitral valve repaired and, after she recovered, I returned her to her family on Haiti’s southern coast.
That dark night in 2001, I invited them inside the guest house and re-examined Mika. What I heard in her chest and what her father told me about Mika, made me realize quickly that Mika needed to return to Peoria for repeat heart surgery.
What is narrative medicine? Rita Charon, MD, PhD writes:
The effective practice of medicine requires narrative competence, that is, the ability to acknowledge, absorb, interpret, and act on the stories and plights of others. Medicine practiced with narrative competence, called narrative medicine, is proposed as a model for humane and effective medical practice.
With narrative competence, physicians can reach and join their patients in illness, recognize their own personal journeys through medicine, acknowledge kinship with and duties toward other health care professionals, and inaugurate consequential discourse with the public about health care. By bridging the divides that separate physicians from patients, themselves, colleagues, and society, narrative medicine offers fresh opportunities for respectful, empathic, and nourishing medical care.
Charon cites literary scholar Barbara Herrnstein Smith who defines narrative discourse as “someone telling someone else that something happened,” emphasizing “narrative’s requirement for a teller and a listener, a writer and a reader, a communion of some sort.”
Along with scientific ability, physicians need the ability to listen to the narratives of the patient, grasp and honor their meanings, and be moved to act on the patient’s behalf. This is narrative competence, that is, the competence that human beings use to absorb, interpret, and respond to stories. … narrative competence enables the physician to practice medicine with empathy, reflection, professionalism, and trustworthiness. Such a medicine can be called narrative medicine.
I put Mika and her father up in the guest house and began working on her visa to return to Peoria for medical care. I remembered Mika as a shy little girl not unlike many Haitian kids from the countryside. But in the guest house in 2001, I never heard her speak once. I would speak to her, but she did not respond back. She did not seem sullen or angry. She just seemed very resigned for a 10-year-old. Mika probably knew that I was going to take her from her dad and family once again.
After several days her visa was approved and her father gave consent for her to leave for repeat surgery in Peoria. I remember carrying Mika in my arms across the hot tarmac at the Port-au-Prince airport since she was too weak to board the plane on her own.
Mika did well on the flights that day and we arrived in Peoria late that night. I took her from the Peoria airport immediately to the OSF-SFMC Emergency Room and rechecked her, wrote up a chart, and after a brief conversation with the attending on call, we admitted her to Pediatric Cardiovascular Intensive Care Unit (CVICU).
In the ER, I placed Mika in a wheelchair and pushed her to the elevator. When we got off the elevator on the fourth floor where CVICU was located, her host family that took care of her during her first surgery was standing there waiting for her. All their eyes were staring at her thin little body in the wheelchair. As I pushed Mika they said nothing to me, but lovingly embraced her back into their family once again. Mika smiled at them but did not speak.
Mika had repeat heart surgery and it seemed to go well. She went home with her host family to recover and her follow up doctor appointments were encouraging.
However, as the months went by, Mika started to deteriorate. Something was wrong. She started to weaken again. Her host mom brought her back to the hospital and Mika was readmitted. An echocardiogram showed Mika needed heart surgery once again.
Mika was placed in CVICU. However, her cardiologist seemed afraid to step in the door to examine her. Fear seemed to permeate the discussions regarding Mika. The politics of the hospital administration toward Haitian kids had changed since Mika’s first surgery several years prior. I sat next to Mika but studied the cardiologist’s face. She needed surgery again to stay alive, but he seemed distant. Mika was in trouble.
Mika was stoic and continued her silence. I still had not heard her utter a word from the night at the Haitian guest house after the loud knock on the metal door.
The decision was made to reoperate Mika. I don’t recall the exact conversations, but surgery was thought to be her only chance. The surgeon took her back to surgery and gave Mika the very best he had to offer. But it was necessary to finish the surgical procedure with Mika placed in deep hypothermic circulatory arrest. Her blood was not flowing, the bypass pump was not being utilized at that point, and her body was cooled to protect her brain while surgery was finished.
Postoperatively in CVICU, Mika did not wake up. We all spoke to her waiting for her to blink her eyes or show some sign of recognition. But she was silent. Several days later, just down the hall in a small room, we had a meeting with all of the specialists involved and discussed taking Mika off the ventilator.
I walked out of the meeting and was staring at the Sister who was President of OSF. I had never seen her in the hospital, let alone in Pediatric CVICU. I remember her referring to me as a “straw man” and then asking me how things were going with Mika. I told her “not well” but that there was much compassion and thoughtfulness in the meeting and there was shared decision making on the immediate fate of Mika.
After our brief conversation about Mika, I noticed that Sister seemed lost and did not know how to get out of her own medical center. I had to take the elevator four floors down with her and walk her to a different building so she could make it back to Corporate. I began to realize that Sister was disoriented. Her own medial center was too hard for her to navigate–not only the physical structure but, more importantly, I believed that the mission philosophy of caring for poor Haitian children with heart problems was at risk. She seemed like a prisoner caught in her own convoluted system of health care that was only going to get much larger and more ethically complex for her during the coming years.
The next day Mika was declared dead and she was disconnected from the ventilator.
Her host family arranged for Mika to have a local funeral. Hundreds of people who got to know Mika and cared for her over the last several years attended her funeral. I didn’t go. I didn’t go.
Her wonderful host family flew her body back to Haiti. Mika’s dad met them at the plane in Port-au-Prince to take Mika back to Haiti’s southern coast for permanent burial.
To remember Mika, her host family opened a little coffee house named “Mika’s” in their town near Peoria. Every time I drive by this cafe, my heart tears a little more.
So that is Mika’s story–told by me, not by her. Maybe Mika never spoke to me because she didn’t need to. Maybe she was protecting me from the sweetness of her voice, the courage of her thoughts, and the dark future that lay ahead. Mika probably knew what was going to happen and wanted me to slowly figure it out.
Regarding narrative medicine, Charon concludes: “Only when physicians have the narrative skills to recognize medicine’s ideals, swear to one another to be governed by them, and hold one another accountable to them can they live up to the profession to serve as physicians.”
However, I have to be honest when I tell you the reason I am producing a narrative about Mika. My reason for writing this story may have something to do with “narrative competence” as described by Charon but does not explain everything. This story does not “provide closure” for me in any way. It doesn’t bring Mika back. It only helps mark the beginning of my medical education without science as the backdrop. I think this narrative is simply my attempt to look back, tell Mika’s story, and put it in context in the journey that was just beginning.