The clinic in rural Haiti is a small stucco building with no electricity or running water. The temperature inside the clinic is 103 degrees, and there is no breeze. The examining-room walls are only seven feet high and afford no privacy.
This is my fourteenth trip to Haiti as a volunteer pediatrician. My twenty-fifth patient of the morning is a three-month-old infant named Joceylyn Marquee, who is completely swaddled in a dirty blanket and is carried in by her mother, Lucie.
In our tiny cubicle, Lucie sits with Joceylyn on her lap. The interpreter, Fredeson, and I are also seated. We’re all so close together that our knees touch. The acrid smell of human dirt, sweat and anxiety permeates the small space.
Fredeson translates the child’s story to me while Lucie, a small, tired, very thin woman in her late twenties, dressed in her finest church clothes, carefully unwraps her baby.
The diagnosis is not new to me, and I have treated many patients with congenital hydrocephalus. At this late stage, there is no cure or treatment that would change the outcome. Even in the US, the treatments for a baby in Joceylyn’s condition are palliative at best.
Giving Lucie this heart-wrenching explanation and helping her face this devastating outcome are things that I’m trained to do. But what I find so painful to hear, through Fredeson, is that Lucie has six other children, that she has had no care for herself or this infant, and that she has waited three months to see what I, the American doctor, could do for her baby.
She sits quietly and almost without expression as I say, “I am so sorry to tell you that your baby has a condition called congenital hydrocephalus. We have no treatment that will change her disease, or the tragic outcome.”
She nods, saying nothing. I sense that she has likely known this already.
“Are your other children healthy?” I ask. “Do you have others to help you at home? How are you managing with Joceylyn, who is so sick and so close to death?” I pause, but she does not answer.
“Is the baby’s father a help to you?” I ask.
Quietly, she looks into my eyes with the directness, resignation and almost regal resilience that I’ve come to admire in so many of the Haitians I care for.
“My mother and my sister are dead, and I am on my own with my children,” she says. “My husband blames me for our baby’s problems. He is embarrassed that I brought this upon our family, and he is making my life very hard.” I understand without asking that he is likely beating her.
Despite the heat, I feel cold. My goal is to provide the best possible care to this baby and her parents–and I fully understand that all of my scientific knowledge will be of no use. My role is not to dwell on Joceylyn’s diagnosis, the scientific explanations for this disease or what I can or cannot do; it is to convey to this strong Haitian woman the nature of her daughter’s illness and to explain that death is the inevitable outcome. My aim is to leave Lucie Marquee feeling no guilt for Joceylyn’s condition, and with a plan of care for her during her final days.
I’ve never been formally trained to provide this kind of care, and yet Lucie has waited all of these months because she believed that one of the American doctors could help her baby. I feel challenged to do everything I can for her. All of my recommendations, care and compassion will have to be conveyed through Fredeson. There are no computers, no laboratory or radiographic tests, no procedures, no consultants to call in–and no time for me to take a mental or emotional step away from this story and this family. That step would have provided breathing room for both Lucie and me, allowing us to absorb this tragic news and then slowly move towards a care plan. In this clinic in Haiti, I have nowhere, physically or emotionally, to step back.
I take a deep breath, stifling my desire to weep.
“Joceylyn is very close to death,” I tell Lucie quietly, “but she is not in any pain, and will not be. You are doing a wonderful job caring for her.” Gently, I add, “We have no medicines to treat your daughter, and there are no operations that will restore her brain. Women all over the world face this same tragedy, and there is nothing that you have done that made this happen.”
She sits quietly, and her eyes are old eyes. She has seen sickness and death, and she does understand.
“Is it possible to have your husband come in?” I ask. “I would like to tell him the same things that I have explained to you.”
“He is outside the clinic,” she says.
“I will hold Joceylyn while you please go find him,” I say.
I gently take Joceylyn and hold her close while Lucie leaves the room. She quickly returns with her husband, Eduard, a very tall, thin young man about her age. He is muscular and fit, with the scarred hands of a laborer.
I stand while we are introduced, and Lucie gingerly takes her baby from me. We all sit down in what is now an even closer space.
I give Eduard the same information that I’ve told his wife. Then I stop for a minute, waiting for his questions. He has none.
He sits, head down, staring at the floor. I have no idea what he is thinking or feeling. I turn to him and wait for him to raise his head and look me in the eyes.
“Eduard, you have, as the provider and father and husband, an enormous responsibility,” I tell him. “In the midst of this tragedy, your job is to take very good care of your wife.” Then I repeat, “None of your baby’s tragic deformities are your wife’s fault, or yours.”
He looks at me with sad eyes, and I know that he understands.
We all stand, and I wish them the best with all of their children.
“It is in your hands to do everything in your power to care for Joceylyn and your wife and all of your children,” I tell Eduard.
They both shake my hand, whispering, “Merci.” Then they quietly cover their baby, and I escort them through the hundreds of waiting patients and out onto the dirt road in front of the clinic.
As a clinician and teacher who practices pediatric infectious disease in a university hospital in Virginia, I know that so little of what I did for Joceylyn and Lucie and Eduard was science–and none of it was learned in the classroom.
In Haiti, the lack of time, the lack of consultants to assist with diagnosis and explanations, and the lack of tests, brain-imaging studies and other procedures left me with no place to hide, no way to stall–no way to avoid the words that needed to be said while providing the best possible care in this clinic, which is so raw and rough.
This doctoring is so very different from how and where I practice at home.
About the author:
Leigh B. Grossman, former vice provost for international affairs at the University of Virginia School of Medicine, is now the school’s medical alumni emeritus professor of pediatric infectious disease and the associate dean for international programs. She teaches at the bedside and in the classroom and has edited and authored five books, most recently The Parent’s Survival Guide to Daycare Infections. Her international experiences include growing up in India, service with the Peace Corps and consultancies for the Pan American Health Organization and Project Hope, and she has participated in eighteen annual medical-service weeks in Haiti. “I have written in my head for years, and I’m now eager to put the stories into actual writing. The wealth of experiences from my years growing up in India, the stories from patients for whom I have cared and the random acts of kindness that I have received are a treasure trove of material. Writing is one way to teach, and that remains one of my greatest joys.”