9:55 PM, 16 March 99, Kalapayan Estate
Exhaustion. Up this morning at 5:30 AM, cold shower, bus to hospital at 6 AM, breakfast, some announcements, a short effort to arrange some chairs in an airless room, then: families, patients, families, patients, one after another, after another, after another.
We passed them on the bus ride to the hospital this morning. They were camped out under the few trees in the courtyard of the hospital, holding rags to their faces against the dust. One after another, after another. Large families clutching a tiny infant or dark-eyed toddler, a preschooler in her ironed Sunday dress, school-uniformed elementary school students – elbows linked with older and younger siblings. The teenagers swaggered in, often alone, with baseball caps just so, a practiced attitude in their walks, a quick hand lifted to their mouth to hide an unrepaired cleft of the lip. If their palate is affected they are reluctant to speak and difficult to understand.
I use translators for the first time. I am assigned a group of first year medical students from the local university. They switch effortlessly from English to Tagalog and back. I remember from training to keep my eyes on the person I’m talking to. Tagalog is at once guttural and musical. There is a rhythm to it but I’m lost without any of the familiar cues of French or Spanish. I remember hello. I remember thank you. I don’t give out much good news. Every possible patient is funneled to me at the end of the screening process, after being poked and prodded and weighed and discussed. I review their files and make sure all the paperwork is there. Then I make sure they understand. In many cases the answer is no, clearly no: we can’t help you. Your case is too difficult, too complicated, your child is too sick, your baby has a fever, doesn’t weigh enough, is too young for the risk of surgery.
Operation Smile uses established parameters. For our safety and the safety of our patients, no child is offered surgery under a certain age or outside a prescribed state of health. We are a surgical mission with a beginning and an end. The odds of a safe, quick recovery must be in our favor. We must avoid complications. Despite the flow of humanity here, the pleading, the 12-hour bus rides with screaming infants, despite the evident, palpable desperation for a normal life, we say no.
Many show up with disorders we cannot treat. I meet a little boy, Miguel, with Apert’s Syndrome, a rare syndrome closely related to my son Trevor’s diagnosis, Crouzon’s Syndrome. Like Trevor, Miguel needs massive staged surgeries only available in Los Angeles, New York, Paris, and possibly Sydney. Suddenly I became an advocate, pulling Miguel’s file for an Australian surgeon who is briefly visiting our team to review possible teaching cases for the hospital he is affiliated with. “Rare” is interesting. Rare is a teaching opportunity. Rare might get little Miguel some help.
A local advertising poster created for our mission mistakenly included a photograph of a child with a large encephalocele. These are defects involving the protrusion of the brain through the skull (a crude layman’s description). They are different and dangerous to remove in the best of circumstances. Because of the poster, many children and adults with encephaloceles show up and, in each case, it is up to me to explain “no” to them. No, it is too dangerous. No, we can’t offer you help.
A father enters my room, his wife, cringing, a few steps behind him. This is his last stop in a long day of waiting through each rung of the screening process. They traveled four hours in the back of a jeepney, the local open-backed panel-truck-like public transportation. He holds his tiny daughter in the crook of his elbow. Her huge head, elongated by a cruel encephalocele, is cradled in a pillow. The growth is so enormous she can’t turn her head from side to side.
The screening doctors gave him the reality. I am thankful for this. I am hot and tired and my legs are sticking to the plastic chair and I don’t want to tell anyone else there is nothing we can do. The little girl is tiny and quiet. She doesn’t cry. She barely moves. Her father holds her carefully, tenderly. There is a shocked look in her round dark eyes. The hair on the side of her over-large head is lovingly brushed back. On her neck there is a tiny gold cross with a dark pearl at the center. I ask him the usual questions, the ones I repeat all day, the ones my savvy translators memorize and, I suspect, improve upon now that they understand why I am here. “What did the doctors tell you? Please repeat it to me. Do you understand? Do you have any other questions? Have you eaten? Do you have a place to stay, a way to get home? I’m so sorry we can’t help.”
I touch this father – put my hand on his shoulder, squeeze his arm. I touch his daughter; trace my finger through her silken hair, brush it up past her perfect ear. I show him a photo of my son. I look him in the eyes and ask the translator to tell him I think I know how much he loves his daughter.
17 March 1999, late
You keep on working. You do the job you remember how to do. The people astound you, alive in this heat like a wall up around your ears.
I make sure and look into everyone’s eyes. I know the words coming out of my mouth only make sense after they are processed through my translator so I try to connect with a direct gaze. If I can communicate concern, care, some form of understanding that I know it is scary, that we are here doing the best we can – is that success? Is it enough?
They file past. In my ordinary life I never encountered adults with unrepaired clefts. It just wouldn’t happen. It wouldn’t be found in the United States. The “cleft cases” I met there all were post-surgical, at least for the outwardly visible part, the lip, by the age of one or two months. Palate surgery, knitting together the roof of a mouth cleaved open to the sinuses above it, takes place before one year of age to avoid any roadblocks to language acquisition and speech development. Afterward there is the possibility of surgical fine-tuning and further consultations with speech pathologists and orthodontists. Cavite offers a parade of teenagers and young adults with hair carefully draped over a gaping mouth, hands practiced in the art of hiding themselves from view.
I sit with a chatty mother and her engaging toddler, Pilar. Her smooth dark hair is clipped back by yellow and blue butterfly clips matching her smocked dress. When Pilar gets fussy her mom plucks a bottle of milk from her bag, tilts her child’s head back and drips a steady stream of milk into the cleft just off the center of her face.
I meet people kept in the house, the closet; kids tied in the backyard, hidden for the length of their lives, children from the streets with thick lines of dirt on their necks and no school learning, no language, no voice because of their broken lips, the broken roofs of their mouths.
My throat hurts from talking. I hear myself repeat the same questions, say the same things. I hand out crumpled translations I brought with me from the US: help for school, for speech, help for nutrition, and help for what now feels like trite American self-importance: self-esteem. Sweat pours down my back and sticks my legs to my cotton skirt. My head feels starchy. Someone from the team walks in and shoves a water bottle onto my lap, “Drink! Are you drinking? You need more water.”
I take a drink and clear a little and nod and look into beautiful dark eyes, touch an arm, smile, squeeze a shoulder, chuck a small chin. I ask again and again, “Do you understand? Do you understand?”