Failure to thrive

I suppose it was inevitable. Sharifo’s baby died, after a year of barely staying alive. The baby underwent three surgeries for a congenital heart defect, and then spent most of his life in the neonatal critical care unit at Children’s Hospital. In the first ten months of his life, the baby had the best medical care available, yet failed to thrive.

When I first met Sharifo a few weeks ago, she told me about her "American baby," the son who had been born in the United States. I commented that she knew a lot of English for someone who hadn't taken classes, and she let me know that she had learned much of her English in the hospital. How foreign that hospital must have seemed to her with its bright lights, incubators, machines and alarms. Sharifo herself is Somali Bantu , a group that had little exposure or access to technology before relocating to the United States.

On that late afternoon, sitting in Sharifo’s cluttered living room a few weeks ago, I noticed an African straw mat placed under the circa 1975 coffee table, the torn window screen, sheets covering the windows and sofas, and a small hospital crib in the corner. Next to the crib there was an IV stand with digital controls; two green oxygen canisters had been haphazardly shoved under a chair. Sharifo knew how to change the IV, how to change the dressings on her son’s surgical incisions, and how to swap out the oxygen bottles. She was a long, long way from a mud hut in an impossibly dusty refugee camp in Kenya.

Sharifo told me that her son often needed to be rushed to the hospital when his condition became unstable. Despite the fact that she has three other children, Sharifo spent night after night at her son’s side. She had hope. The very nature of the hospital, the technology, and the doctors and nurses who doggedly worked to keep the baby alive all gave Sharifo the impression that her son would undoubtedly survive and live to be a healthy child.

The reality is that had Sharifo’s son been born in either the Dadaab or Kakuma refugee camps—Sharifo’s home prior to living in the States—the baby would have died within days of being born. Sharifo knew that, and while seeing the centuries of difference in the kind of care available, she had no reason to believe that this baby, the one born in the US, would not respond to the doctors, the technology, and the vast sums of money being focused on her son.

What must it be like to believe you are functioning within a world of hope and possibility, to think that you have no reason to doubt these educated people and their technology, only to find out that the outcome, although protracted, is no different than it would have been on a dusty plain in Kenya? I cannot fathom the depth of Sharifo’s sense of loss, her grief, and her profound disappointment in a situation that showed such promise.

Sharifo is not alone. The Bantu community has rallied around her, filling her house with love, support, and comfort. In Bantu culture, there are no visiting hours; community members come and they stay in the house for days, physically filling the space so the grief can be absorbed among many, and not allowed to grow to fill the empty places of a quiet house.

Sharifo and her family have no money. Sharifo was never able to work because she had small children and then the son who was so sick. Her husband works, but doesn’t really make enough to support the family. They live in public housing and make the most of what little public assistance they receive. Who will pay for the funeral? Where will the baby be buried? Do Sharifo and her husband understand the death practices that are the cultural norm in this country?

It breaks my heart to know that Sharifo—so focused, so tired, and so hopeful about her son—has suffered this loss. I know that the other Bantu families will do what they can to soothe her grief. Still, how do you move on after you’ve lost your home, your homeland, a big piece of your culture, and then the most precious thing of all, the child who you had hoped would be the start of your family’s second generation—a new life within your new life?

I cannot imagine.