Creating Smiles, Improving Lives

Austin Smiles Blog

by John Paschal

The workday is over now, and the streets are slick with the afternoon rains. Those streets gave a second presence to storefront lights as we made our way back to the hotel tonight, the 6 p.m. shimmer making connected reflections of what had been the dry morning streets. Hours earlier, at 7 a.m., the Austin Smiles team, or part of it, had traveled by way of the same van on the same pavement to arrive at the narrow gateway of the Moore Pediatric Surgery Center, wheels squeezing through the tight dimensions to enter and open the great chaotic day.

What followed is what made the ride home such a meaningful way to look back.

At 7:30, angled light falls yellow-white on the families beneath the avocado tree. They are here, of course,  so that their children might someday wake up to a day like this one, a sunny day in central Guatemala, but without the need to see surgeons who might tighten up their smiles, buff up their speech, make breakfast a much better experience. This will all have been done. In the courtyard, and then in the indoor waiting area, dozens more families — moms, dads, grandparents, siblings and of course the prospective patients — wait patiently for the evaluations to begin. Each is a kind of fate, good or maybe not so good, waiting in abeyance.

Voices. Faces. They lodge in memory and then mingle in blurs and echoes, each bumping and fading into others. But the names are firm on the list, 154 children awaiting evaluation. One family in the waiting room — mother, father, six-month-old baby with a cleft lip — travelled for a day by bus to get here. Around the child are the others, their stories no more or less important.

At 8 a.m, Katerin Perez arrives in the ENT room in the arms of her father, Carlos. A two-year-old from the town of Villa Nueva, Katerin has already passed through the plastic-surgery consultation room, staffed by plastic surgeons Dr. Fred Wilder, Dr. David Wainwright and team leader Dr. William Gorman, and is now in the company of Dr. Syboney Zapata, who will determine if Katerin needs ear tubes to eliminate fluid and if she is tongue-tied and in need of a frenuloplasty. No other surgeries are necessary now. Katerin is a veteran of this place.

In 2011 she underwent cleft lip surgery here, and in 2012, cleft palate surgery. Now, wearing a pink sweater, brown pants, pink socks and white tennis shoes, she opens her mouth and says “aaaah” as Dr. Zapata examines her oral cavity. Moments later she smiles, beautifully, as the doctor examines her ears

As it turns out, Katerin will need tubes and a frenuloplasty, procedures to be scheduled for later this week. “She is a great example of continuity of care,” the doctor says as the girl sits comfortably in her father’s lap. “She’s been here three years in a row. She’s doing great. She’s pretty much on target for every two-year-old on the planet.”

Holding her father’s hand, Katerin breaks out in a big smile and begins laughing. Her dad smiles with her and says through a translator, “She is living life. She is perfectly normal. She is not embarrassed and she loves to talk. She loves to talk! She’s playing with other kids. She’s having fun. She is a normal kid.”

Amid The Noise and Clamor, the Morning Moves On

At 10:40, a higher sun is shining on the kids in the courtyard. They are playing, laughing, running around. Some are waiting for evaluation; others have been evaluated already and are waiting with their parents to see the social worker, Dalia Guzman, about pre- and post-op care.

On a nearby bench, Alan Lobos of Guatemala City is cradling his four-month-old son, Gerardo. Despite the noise and laughter, Gerardo is quiet, as if asleep, though his eyes are wide open.

Tranquilo,” says his dad with a laugh.

Inside, the halls are less than tranquil. Some babies are crying. Some kids are screaming. Still, the parents are almost preternaturally calm. Patience here, it seems, is a virtue among virtues.

Inside the evaluation room, 16-year-old Keila Carrera is seated in a plastic chair and facing the plastic surgeons. She seems nervous, uncomfortable, as the men ask questions  — “How does it bother her?” Dr. Wainwright poses to the translator, Alejandra Ramirez — and begin shining a light in her oral cavity to determine a possible course of action for her palate. Keila’s mother, Miriam, sits quietly beside her, listening and watching. Moments later, perhaps overwhelmed by the attention, Keila begins to cry.

Her mother smiles gently, and Keila soon regains her composure.

Patient, too, the surgeons continue the evaluation.

In the back of the room, volunteer Austin Lutz pauses while doing paperwork and says, “It’s strange. . . .  All these people looking at them like they’re a subject in an anatomy book, but that’s how you have to address surgery.”

Moments later, mother and daughter stand and thank the surgeons. The men have determined that Keila is a good candidate for a lip revision and a rhinoplasty. Behind them, a ballpoint pen goes whisking across paper. The door swings open, and the next candidate comes in.

The Kids Keep Coming

Back across the hallway, Dr. Zapata is poised to examine perhaps the 30th child of the morning. Already she has seen kids like Christopher Retana, 4, who, while sitting in his mother’s lap, kept laughing as his older brother made faces at him through the window behind her. She has seen Sharis Coyoy, 10, who underwent cleft palate surgery at age 4 and cleft lip surgery at 6, and who later this week will undergo a rhinoplasty, an otoplasty and a lip revision. But here between the procedures, she patiently answered questions while holding her mother’s hand.

She has seen five-year-old Diego Yalibut, wearing perhaps the coolest little track suit in all of Guatemala, and four-year-old Mario Concoba, dressed in gray slacks and a Toy Story Mania T-shirt while enjoying a red Tootsie Pop. She has seen Juliana Letran, who, in the days before a secondary palate procedure, giggled while playing with the doctor’s stethoscope cover, a fluffy lion. And she has seen tiny Cristaal Lopez, who, in this time before her primary palatoplasty, cried in her mother’s arms, aware only of the discomfort and not of a future when she might speak and eat and smile like any other child, with no memory of a time when she couldn’t even dream it. And still the children keep coming. The romance of a mission trip quickly yields to the reality of it, the duty. Novelty gone, you fight through tedium and fatigue. If not for the list of patients, the names would surrender to a jumble unsorted by memory. And yet despite this jumble, despite this mental confusion of faces and names, the child attached to that name is not compromised in his or her importance. The child is not diminished by numbers. He is not made smaller, less vital, simply because he is not alone in this need. She is not lost in the volume of children in similar circumstances. The circumstances have delivered each child.

It’s Not Over Yet

In the evaluation room, nine-year-old Cesar Reyes is grinning broadly as he sits in the chair.

“OK,” Dr. Gorman says cheerfully,” and why is he here?”

The answer: “He wants to have surgery on his nose.”

“How is his speech?”

“No problems. Speech is good.”

Dressed in blue sweat pants and a red Bruce Lee T-shirt, Cesar is still smiling.

“OK,” Dr. Gorman says with a grin, “we’re gonna work on his nose.”

As he walks away, Cesar gives a high-five and a fist bump to each of the surgeons.

Made stark, meanwhile, is that none of this is automatic. Everyone’s a human doing human things. Prospective patients arrive with histories all their own, biographies that until now have not included these strangers from the United States. At the same time, the group from Austin Smiles is asking questions and probing cavities and taking notes, all in an effort to bridge this gap that decency has already shortened and will shorten even more, at last to create a joining.

The bond will remain, even if patient and provider are thousands of miles apart.

At 11:25, volunteer Jill DeCabooter enters the ENT room while holding tiny Dante Morales, 6.6 kg in weight. Dante, dressed in a light blue onesie and little blue socks, is crying. His mother, Angela, looks weary, her face registering the fatigue that others are surely beginning to feel.

“They’re so tired already,” Jill says quietly to me as Dr. Zapata addresses the mother.

Jill gives little Dante a kiss and whispers, “I’m just trying to give them a break.”

Meanwhile, in rooms and hallways throughout the clinic, other volunteers from both countries continue to assist the effort. At the corner where the two crowded hallways meet, volunteer Francesca Judge is holding a pair of stuffed animals, to be deployed at appropriate moments.

“I’m mostly here to do data entry,” she tells me with a laugh, “but that sounds boring. How about we say I’m here for entertainment?”

Back inside the evaluation room, volunteer Pearl Falkenberg is handing each child a Tootsie Pop as he or she comes away from the exam. “I like to be the good guy,” she laughs.

Not everything is so sweet. We dream of the glory of the mission, but it’s not all peaches and cream. On the other side of the room, the surgeons are telling a mother that her daughter is not a good candidate for palate surgery.

“So she’s always going to speak like this?” the mother asks.

There is a long pause. The silence is ponderous.

“Unfortunately, maybe,” Dr. Gorman answers in a direct but sympathetic tone. “Too much of the palate is scarred after the previous surgery. I don’t see anything we can do.”

Later, Dr. Gorman will privately express his frustration. The team simply isn’t equipped to do every possible procedure, he will tell me. Some children will have to be turned away.

Still later, he will tell me of a teenage girl he had evaluated, one with a severely recessed chin.

“We’re just not equipped to help her here,” he will say, shaking his head. “It just isn’t possible. But maybe at some point, we can bring her to the United States. We can get it done.”

A Look To What’s Ahead

At 4 p.m., surgeons and staffers gather at a big rectangular table to begin the difficult process of scheduling four days of surgery. On a flat-screen TV at the front of the room is a complicated grid full of names and information. Meanwhile, outside these walls, other staffers and volunteers are working, too, their efforts unseen but necessarily intertwined. As the surgeons discuss their options, a rain begins falling outside. Cool air comes in currents through open windows, with the universal aroma of rain. In moments a rainbow has striped the black clouds.

Later, as a light rain falls, we climb into the van for the 20-minute ride.  We look back and talk in crisscrossed voices about the long day we’ve shared. Tomorrow will come to the same sort of mirror, the same looking back. But not yet. Tomorrow will first have to become today.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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1 in 700 children are born with a cleft lip or palate

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