Global Doc: Dignity in death

Author: Dr. Vincent DeGennaro Jr. ’02

Vincent DeGennaro

“He’s in the office there. Go listen to his lungs and tell me if you have any idea what he has,” one of my American colleagues said to me.

I walked into the office and saw two adolescents, both of whom appeared to be no older than 10. The boy’s shoulders and head were too large for his stunted, thin frame. His skin was flaking and hugged close to the skeleton. His lips were purple instead of brown. The girl was larger and had a round moon face. Her cheeks were puffy from a medication side effect. They were thumbing through a coloring book placed among a suitcase full of donated toys. I had only been in Rwanda for three weeks at this point and hadn’t met either of the two chronically ill children who were fixtures on the pediatric ward.

“Mirigwe. Amakuru?” I asked both of them and smiled, offering my hand. Nobody was there to translate, and I couldn’t speak enough Kinyarwanda to let them know that I wanted to examine them. So I placed my stethoscope on the chest of the girl and took a deep breath, pointing at her to imitate me. I did the same for the stunted boy, and heard the crackles of Velcro being peeled apart. I examined him more thoroughly and then let them go back to playing while I looked at the CT scan of his chest. Like the dozen doctors before me who had tried, I could not put his illness together into one diagnosis. We thought of a few more tests to order, and continued treating him for tuberculosis, one of the great masqueraders.

Michel had been thrown out of his house at age 13 because his family could no longer afford to take care of him. He lived on the streets of a town near Rwinkwavu Hospital with a group of other boys his age, and by the time my colleagues found him, he was covered in scabies and severely malnourished. He spent three months in the hospital and was nursed back to health, and everyone fell in love with him. He was sent to school for a few months before he came back to the hospital with difficulty breathing and fatigue. I met him after he had been back in the hospital a few months, and his face appeared as if he had already lived a full life, belying his diminutive size.

Virginie had chronic kidney failure from an autoimmune reaction that occurs in children but is usually diagnosed earlier and therefore is more treatable. Virginie had been having symptoms for several months before the swelling in her arms and legs prompted her mother to seek care for her. Her mother, who was from a poor family in a community near the hospital, was living with HIV. After she had brought Virginie to the hospital, she rarely visited; she had other children to care for. We were treating the cause of Virginie’s kidney failure, but her kidney function continued to slowly deteriorate over time.

Since they were both effectively orphans in the hospital, Michel and Virginie spent all of their time together. As is the custom in Rwanda, the entire community pitched in to raise the two children. Nurses and doctors would scold them for running on the ward or for not finishing their dinner. Michel and Virginie were the oldest two children on the pediatric ward; she was a year older but nearly normal size for a girl of 14. They slept on two beds in a corner but constantly walked around the grounds of the hospital and the office buildings farther up the hill. They quickly became favorites of the expatriate staff, who gave them toys and clothing or let them play with their electronics for a few hours. Emily, a pre-med student in Rwanda for more than a year, became particularly attached to Michel. She read to him and visited him frequently, watching silently as he changed the settings on her iPod. Virginie never flinched at all the attention lavished on Michel, knowing that he would share with her once he had satisfied his curiosity.

Michel, who spoke no English and could barely read, figured out how to play music, film videos and download music on iPhones. He surreptitiously toyed with my iPhone, maintaining the devilish smile and tough exterior demeanor of a street kid. Michel was undoubtedly the king of the pediatric ward, refusing medications and blood draws when he wasn’t in the mood, and directing the nurses on which food to bring him for dinner. The nurses treated him as if he were their adopted son. As his condition slowly worsened and he was placed on oxygen, he learned how to titrate the quantity of oxygen he was receiving regardless of what the medical staff thought was best.

We held a conference call with a group of pediatricians in Boston to try and figure out what was wrong with Michel because he was now tethered to a tank full time, unable to be off supplemental oxygen even while eating. We biopsied lymph nodes and skin, and sent samples of blood, urine and sputum to be examined in Boston. Virginie was still mobile and could have continued running around the ward, but she chose instead to remain in her bed, caring for Michel.

The diagnosis finally came back as a lymphoma of the skin, extremely rare in Michel’s age group. We started chemo that afternoon. A week later, he was nearly off of the oxygen. Virginie was ecstatic, at least for a time. But the success was short-lived, and the oxygen dial was slowly ratcheted up. Every morning I would come in to see Michel, and he had turned the oxygen back up to full strength.

“My chest hurts when you turn down the oxygen,” he said to me in Kinyarwanda through the plastic mask. He received another three cycles of chemotherapy over the next two months. Each time, he improved slightly for a week or so but continued to require full oxygen and continued to have pain in his chest. He would lean forward against the bed, placing his face in the pillow with his butt in the air while clutching his chest with both arms.

I was sitting in the office building up the hill from the hospital when my phone rang. “Michel est décédé,” the best nurse on the pediatric ward said.

“Je ne comprends pas. What happened?” Blood flushed to my face, but I wasn’t sure that I had understood the French correctly.

“Michel est mort. Je ne sais pas pourquoi,” she repeated. I ran to the pediatric ward — his body was already gray but still warm, except for the thin layer of sweat covering his bald head. He was in the position that he assumed when he had chest pain, and his arms were still crossed over his chest. We failed to save him, but I felt worst that he had died in pain, and I quickly placed his lifeless body on its back, unable to bear to see him still in pain even in death.

I looked around. Virginie was not in the ward. A stone-faced woman with Michel’s sad eyes and thin lips sat on Viriginie’s bed. “C’est la mama,” the nurse said, reading my mind. In nine months of caring for Michel, I had never met his mother. God called Michel home on one of the rare days when his mother was actually there to comfort him. Virginie was outside the ward, with tears rolling down her bloated cheeks. I held her and called Emily on the phone to help comfort her. Emily came and sat next to her, tears streaming down her face while gently rocking Virginie. Rwandans tend to not be emotional about death, and Michel’s mother didn’t utter a word but silently watched us as we prepared his body, finally removing the oxygen mask that he had worn continuously for three months.

The next day we loaded into cars to go to Michel’s funeral. The caravan entered the town where Michel had been raised, and where he had been kicked out of 18 months earlier. He left as another street kid and returned as a hero. Five cars and a half dozen Americans attended his funeral, both signs of status in rural Africa. His mother remained stoic throughout the service, and Emily cried her eyes out. His miniature coffin was lowered into the ground, covered with palm fronds and then dirt. Once the hole was filled in, concrete was poured over the site. The foot layer of concrete meant that the site couldn’t be used again as a burial plot and couldn’t be farmed ever again. Partners in Health had paid for the extravagant burial, giving Michel dignity in death. I choked back tears and took deep breaths. Men are not permitted to cry in Rwandan culture, and a respected person such as a doctor is certainly not allowed to cry in public. I would have to grieve later in private.

Virginie was never the same. She stayed in her bed in the corner and was not stimulated. It bothered her as much as it bothered me whenever a new child came into the hospital and was placed in Michel’s bed. She helped care for some of the younger children, and I tried to teach her English when I could. Some of the attention that Michel had gotten finally came to Virginie, but she wasn’t sure what to do with it. Her kidneys continued to deteriorate and we discussed our options as she became confined to her bed, just like Michel had been. We looked into a kidney transplant in India. Dialysis would have kept her alive in the short term, but it is prohibitively expensive and it would have meant constant infections and illness. She would have had to live in the hospital until a kidney transplant became possible. She was transferred to Kigali several times over the next two months, each time as she had severe side effects from her kidney failure. I met her mother at the hospital in Kigali.

“You know that she is very sick, right?” She nodded after hearing the translation. “We’re doing everything we can, but she will continue to get worse.” Characteristically, she showed no emotion, but she began to stay around the hospital more often. Virginie was transferred back to Kigali when she was weak and vomiting, but without plans for a transplant we could not start dialysis. Without dialysis she died a week later, reunited in death with Michel.

“Murakoze umuganga,” a voice said to me. Thank you, doctor. A month had passed since Virginie died, and I turned to see her mother, at the clinic for her HIV medications. “I truly appreciate everything you did for her.”

“You’re welcome,” I replied and hugged her, once again fighting back the tears.

Vincent DeGennaro is an internal medicine doctor and a global public health specialist in the Department of Global Health and Social Medicine, Harvard Medical School. See his An American Doctor in Rwanda blogs.