A month went by. And then two. Enel’s passport finally came through, but he was still waiting for Davidson’s.
In the meantime, Anne arranged free housing for Davidson and Enel at the Ronald McDonald House around the corner from Boston Children’s for when they would arrive. Another month passed. And then another two. Still no passport for Davidson.
When I wrote to update Mark and the Boston Children’s team that we were still waiting for the patient’s passport to come through, they replied that if surgery was not scheduled within two months, they would lose their free-care allotment from the hospital for the fiscal year. They told us that they had been unable to offer free neurosurgery to another child because of their commitment to our patient’s care. If we couldn’t get Davidson to Boston for surgery in time, their free-care allotment for the year would go to waste.
I felt horrible. Another child had missed out, and Davidson could miss out too, all due to administrative delays in Haiti. Not only was this bad for the patients, but it would also reflect poorly on us for any future efforts to bring a patient to Boston Children’s. After all of the twists and turns of Janel’s care—not to mention his unfortunate outcome—I was worried we could be giving ourselves a “strike two” in our attempts to create a pathway for big save neurosurgical cases to come to Boston from Haiti.
We decided to ask one of our colleagues in Haiti to interface with Enel to try to help him navigate the passport process to get Davidson to Boston in time. Unfortunately, our colleague came back with bad news:
Enel told me, YESTERDAY, that he has/had a passport. Passport agency took it to use for Davidson and lost it apparently. They could not find it . . . tèt chaje!
Tèt chaje literally means “burdened head.” It’s one of many expressions describing one’s head in Haitian Creole, along with tèt cho (“hot head”—angry and/or disorganized), tèt anba (“head down”—embarrassed or passive), tèt vid (“empty head”—out of it), tèt gwo (“big head”—anxious), and tèt lou (“heavy head”—worried). Tèt chaje is a common expression of bewilderment, frustration, and/or disgust in Haiti, something like “Oh my God!” in English. How could a government agency lose one of its citizen’s passports? Sadly, in Haiti, it wasn’t so unbelievable.
Our colleague in Haiti wrote to us again a few days later to let us know that Davidson’s passport had come through, but Enel’s was still missing.
Since we were cutting it close, I wondered about just bringing Davidson to Boston and looking for a host family. Bringing Janel alone had had its challenges, to say the least. Would it be simpler for a five-year-old than it had been for a twenty-three-year-old? More challenging? A five-year-old alone in a hospital in a foreign country was certainly a suboptimal psychosocial situation. But so was becoming progressively quadriplegic from an operable lesion due to a bureaucratic mess in Haiti when there was the possibility of free care just a short flight away. I called Anne to ask her thoughts.
Anne didn’t know of any cases in which PIH had brought a child so young to the US without a relative. She thought she could convince her parents to house Davidson after his surgery, but she pointed out that the hospital was not likely to be amenable. Who would sign consent? Who would stay with the child overnight and help him communicate his needs to the staff?
We tried to call Enel to discuss this with him but were unable to reach him. Our local colleagues couldn’t get in touch with him either.
The window for free care for Davidson was about to close.
I was headed back down to Haiti and offered to help with the passport situation if I could. But we were running out of time.
Tèt chaje!
14
The rehabilitation ward at HUM is a small, L-shaped white building with a bright orange door. One segment of the L has a gymnasium for physical therapy, the other, a small ward. The white interior walls are decorated with purple curtains, brightly colored tile mosaics, and posters of Haitian Creole proverbs:
Piti piti, zwazo fè nich li.
(Little by little, the bird builds its nest.)
Men anpil chay pa lou.
(Many hands make the burden lighter.)
Tout moun se moun.
(Every person is a person.)
Toutan tèt ou poko koupe espere met chapo.
(As long as your head is not cut off, you still have hope to wear your hat.)
As I entered the rehab ward, I saw Janel lying in the last bed at the end on the right, past a young man with paraplegia (both legs paralyzed) from spine trauma, an elderly lady with hemiplegia (one side of the body paralyzed) from a stroke, and a teenage boy with severe mental and physical disabilities since childhood who’d been abandoned on HUM’s doorstep and had lived there ever since. Janel’s hair had grown back thick and was matted in places. His mustache had grown out into a few long spindly whiskers at the edges. Even from across the ward, I could see the broad whites of his eyes, his familiar wide-eyed stare. He lay there, still.
Next to him was a thin older woman sitting in a chair, holding his hand. I realized immediately that she must be his mother. Her skin was darker than Janel’s, her face showed the weathering of age with deep creases across her forehead and along each side of her mouth, and of course her eyes did not appear to bulge as Janel’s did, but the resemblance was otherwise unmistakable. From beneath her bandana’s swirling pattern of yellow, green, orange, and blue, a few short gray braids of hair peeked out, dangling in front of her ears. She wore a small blue, black, and yellow striped polo shirt and a black knee-length skirt that hung limply on her thin frame.
I paused. I had seen her briefly when she brought Janel to HUM over a year prior, but we hadn’t spoken. Since then, my colleagues and I had taken her son for most of a year. She didn’t have a phone, and so we were never able to talk directly to her. Wilner had assured us he visited her and updated her, but did she know of all of the setbacks, fluctuations, and behavioral outbursts? Had she shared the fear we’d had when he took weeks to wake up after surgery? Or had she been largely shielded from all of this by Wilner, just being told periodically that Janel was doing okay? I didn’t really know what she knew. If she had hoped Janel would return from lòt bò a—the other side—miraculously cured, I imagined she must have been devastated by the failure of that hope to materialize. I thought of how disappointed she must be that he looked more or less the same as before he left—if not worse—sleeping his days away and minimally interactive when he was awake.
My Creole was coming along, but it wasn’t good enough to explain that I was sorry he wasn’t better, sorry he might even be worse. How would I apologize for any false hope we may have given her that he’d be saved or at least better than before?
I took a deep breath and made my way across the small ward between the two rows of hospital beds. As I approached Janel’s mother, she looked up at me with curiosity. Then she suddenly leapt up, her eyes brightening as she smiled the same smile Janel had rarely revealed to us, one so broad that it seemed to show every last tooth. She was missing many of her teeth, and many of those she did have were chipped or crooked, but this didn’t diminish the radiance of her smile. She spread her long, thin arms outward as if preparing to embrace her own son.