Focus on the small wins, I tell myself. The sleeping baby hugging the teddy bear you brought him. One patient pushing another in a wheelchair through the corridors. A nurse warmly greeting you with a hug at the door. Sneaking extra sweets into a patient’s hands. These are the moments that can be easily forgotten amidst the overarching sadness of a paediatric hospital ward with the smells, the cries, and the hollowed eyes.
I’m often asked how I can handle working in such an intense environment. “Wine and cheese” is my usual response! But it is really the focus on the small moments that keep me going. They have to be enough for now.
Especially for mornings like today. This was my first time visiting the burn ward at a large hospital in Kenya. As I entered the room, I was overcome by the piercing sounds of crying children. From my babysitting days, I am used to two-year-old tantrums and playground mishaps. Here, however, sheer physical pain is the driving force behind the guttural cries.
I remember being in a paediatric cancer ward in Uganda and hearing a girl scream so loudly that I couldn’t hear my own thoughts. I asked the nurse what was causing her distress and she said the cancer had gone to the child’s brain. In the bed next to her was a silent little girl, the tears already come and gone. In an attempt to make logical sense of this, I started to compare which was worse: the loud cries or the silent ones. And I realized it didn’t really matter.
These memories resurfaced as I entered that burn ward in Nairobi. I saw a 10-year-old boy who was screaming in Swahili about his leg pain and his soiled pants. I was also taken aback by the smell of faeces on the floor and the chair. When I tried to find a nurse to help, I was told that the boy was already in line to have his dressing changed. I felt helpless as he looked around the room for someone, something, anything to help him, even though we both knew nothing really would. When the nurse was finally ready for him, I began walking him to the room where his wounds would be dressed. He moved slowly, still screaming and holding on to the wall for support. There was no wheelchair in sight. The hospital policy prohibits them in order to ensure that the children keep moving to prevent their legs from getting stiff. I took his hand and rubbed his back as we moved through the corridor in an attempt to ease his pain. He clutched my hand and occasionally glanced my way, and I knew my presence counted for something.
As we passed the nursing desk, the nurse looked at me and said, “You know he can walk on his own.” I held my tongue and took a deep breath. I reminded myself that I had only been here for an hour and this woman was overworked and underpaid, day after day. As we approached the dressing room, another boy came out, clean, but still screaming, gearing up to make the long trek back to his bed. There seemed to be no part of this process that provided any relief. Compared to some clinics I have visited, I know that these patients are lucky to be in a place where staff are changing their dressings, providing meals, and keeping them (mostly) clean. There were other children in the ward who had visible scarring but were jumping from bed to bed and laughing. Many of them were drawing with pencils and playing with blocks. It was a welcome reminder that those screams could eventually turn to laughter.
When I am in the hospital, I focus on the concrete issues, the children’s names, the staffing dynamics, and the logistics of the ward. But when I go home, the bigger questions arise that can’t be answered by a medical record or a family meeting. For example, I understand that people can die at any age, but why does it so often have to be accompanied by pain? Why are some babies born without a fighting chance before they open their eyes? Why are some children surrounded by love wherever they go and some left at the hospital alone?
This activity is a slippery slope that can lead to sleepless nights and hopeless mornings with no logical answers in sight. So instead, I will just try to minimize that aching as much as possible. In the end, the ward really needs more staff and stronger pain medications, but this will take time. For now, I look for the smaller, quieter ways to improve the quality of life of the children who are there. Brighter walls, stuffed toys for support, more volunteers for basic human connection, and maybe even a few extra sweets. Doing my best to always focus on the small wins with the hope they will be a small piece in solving the bigger puzzle.
About the author
Sophie Kieffer is a passionate advocate for paediatric palliative care who has spent time visiting different successful paediatric palliative care programmes in Eastern and Southern Africa. She has also volunteered in similar work in South America, Nepal, and Israel. Sophie holds a Master’s degree in Global Health from Georgetown University in Washington, DC and presently works from her base in Kenya for an NGO supporting vulnerable populations in Somalia.