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‘I feel happy at last to be like other children’

Children in Ecuador have the highest rate of microtia, a missing ear. Boston surgeons are joining in a mission to tackle the condition

By Bella English
Globe Staff / June 13, 2010

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QUITO, Ecuador — When the American doctors arrive at 8 a.m. in a worn-down hospital in a working-class neighborhood of South Quito, dozens of patients are waiting on benches. Some came from the Quito slums. Others took the bus from the Amazon jungle or the coast, riding for as many as 20 hours to meet the team that will give their children what nature forgot: a new ear.

Ecuador has the highest rate of microtia — the absence of one or both ears — in the world. No one knows what causes the condition or why it hits so hard here, but the plight of these children is heartbreaking. There are stories about parents abandoning disfigured children in trash bins, of fathers abandoning families out of shame, of children and adults facing ostracism and worse.

“They call these kids ‘cups’ because they have only one ear,’’ says Dr. Patricia Jarrin, a Quito plastic surgeon, drawing a picture of a teacup with one handle. Though patients can hear out of their good ear, there is limited hearing on the other side.

For the past eight years, a team of doctors and nurses — some from the Massachusetts Eye and Ear Infirmary, some from Rochester, N.Y., and others who have connections to one of the two places — has returned annually to give the children ears, in a mission financed by the HUGS, or Help Us Give Smiles, Foundation.

On this most recent weeklong trip to Quito, a team of 30 — nearly a third of them from Boston — would work on 76 new ears, fashioned from the patients’ own cartilage, tissue, and skin, and complete another nine comparatively minor procedures. For the patients, the surgery is free. Based on Mass. Eye and Ear fees, the week’s work, with hospitalization, is worth at least $1 million. For this trip, HUGS spent about $60,000 on supplies, transportation, and lodging for the team.

There would be 14-hour days and missed meals. Several members of the medical team would find themselves hooked up to IVs in the wake of “turistica,’’ or the stomach bug. Besides the microtia cases, doctors would operate on a teenager whose ear was partially bitten off in a fight and a boy whose ear was shorn off in an accident.

As the HUGS team enters the Instituto Medico Tierra Nueva, lugging literally a ton of medical equipment, they’re greeted as returning heroes.

“Gracias a Dios por los doctores,’’ says one father, whose 11-year-old son wears a broad-brimmed hat. They’ve come by bus, changing a couple of times, from a mountain village because of the doctors that can give the boy an ear — and relief from the constant schoolyard taunts.

“I feel happy at last to be like other children,’’ says another boy, Bryan Chuquitarco, 12, speaking in Spanish. He’s a stage three patient — the treatments usually require four stages, or surgeries. When he was born without a right ear, his father left the family. His mother is raising five children on what she earns washing clothes. Tearfully, she says she doesn’t know what she’d do without the doctors.

Ecuador’s disease
Researchers speculate that the frequency of microtia in Ecuador may be traced to oxygen-thin air at high altitude; Quito sits at nearly 10,000 feet. Or perhaps it is something genetic in the indigenous population, which also experiences high rates of other deformities such as cleft palate and lip. One theory implicates the 1.5 billion barrels of oil Texaco pumped out of the jungle for nearly 25 years, and the possible contamination of the water table in the remote region. Whatever the cause, the rate of microtia in Ecuador is six times higher than the world average. In the United States, it affects 1 child in every 10,000; in Ecuador, it’s 1 in every 400.

Fifteen years ago, as part of the Massachusetts-based nonprofit Medical Missions for Children, Dr. Mack Cheney was working on cleft palates and lips in Quito when he began noticing cases of microtia. Cheney, director of facial plastic and reconstructive surgery at Mass. Eye and Ear, had done microtia work in Boston and wondered if the surgery could be replicated in a Third World setting.

Fixing microtia is not easy. The delicate procedure involves taking rib cartilage, sculpting an ear framework from it, and making a “pocket’’ in which to anchor the ear, which is then covered by a skin flap. And that’s just the first stage of a four-year process. At the end, many girls ask the doctors to pierce their proud new ears, so Cheney always brings along a box of gold-plated earrings.

“You have to take rib cartilage, so it becomes chest surgery as well as head and neck surgery,’’ says Cheney, 54. “No other medical group to my knowledge, and there are hundreds, has dedicated a full mission to this clinical problem.’’

As part of Medical Missions for Children, Cheney began to do some microtia work in Quito. But there were so many cases he thought it deserved a separate foundation. He asked his best friend, Dr. Vito Quatela of Rochester, if he’d be interested. In 2003, HUGS was born, with Quatela, a gifted surgeon and fund-raiser, as its founder and president and Cheney as a board member.

From shame to shine
The new patients wear their hair long, or they wear a hat. The veteran patients have cut their hair short, or they pull it back in a ponytail.

“If they’re willing to show off their ears, that’s when you know you’ve been successful,’’ says Dr. Paul Sabini, a plastic surgeon from Newark, Del. His first patient, eight years ago, remains his favorite story. A teenager had come in from the jungle with slash marks on his wrists from suicide attempts. Born with neither ear, he had been subjected to abuse. It took five years, but he ended up with two real-looking ears, and a transformed sense of himself.

“He came in for the final time with short hair, very proud,’’ says Sabini.

The team has five days to perform dozens of operations, plus a first day of intake and a last day of clinic. Already, they’re overbooked by about 10 youths.

Most of the surgeons, nurses, scrub techs, and physicians’ assistants had been there eight months earlier, and they greet their old patients as well as new ones. The group from Mass. Eye and Ear also includes a researcher, Dr. Juan Malo, who is trying to figure out the roots of microtia. Midweek, he’ll ship 160 test tubes of blood and some tissue samples to Harvard Medical School.

In cramped quarters, nurses and technicians get to work unloading 20 hockey bags of equipment: drugs, drapes, towels, scrubs, sutures, surgical instruments, drains, tubes, syringes, defibrillators. They’ve hand-carried the anesthesia and recovery room monitors. Others get to work turning four examining rooms in this old maternity hospital into operating rooms, and an open area off the hallway into a recovery room.

The first day, patients are called one by one for check-in, where Missy Allen greets them with a hearty “Hola! Buenos dias!’’ and hands them surgical consent forms — and candy. Allen, manager of the Facial Plastic and Reconstructive Surgery Center at Mass. Eye and Ear, is a trip veteran; the others call her “mission control.’’

The patients are photographed before heading over to the surgeons’ table where Dr. Tessa Hadlock examines them. “He’s got a B-minus definition on the left,’’ says Hadlock, who is the director of Mass. Eye and Ear’s facial nerve center and the group’s main contact with patients and parents, as she speaks fluent Spanish. Laura Rykard enters all the information on a laptop. In Boston, she’s patient care coordinator of the facial nerve center.

Next, patients are measured for a template for their new ear. If children are too young or unhealthy, they’ll be told to return next time, like Bryan Chuquitarco, who has a fever.

Four years ago, Jeyson Achig was told he needed to wait. Now 11, he’s a stage three patient. His black hair covers his ear area, and a hat covers his hearing aid.

Jeyson’s father, Jose, a house painter in a mountain village, says his son rarely takes off his hat. “His hearing isn’t perfect, but he cares more about the looks,’’ says the father.

Though the microtia surgery is entirely cosmetic so far, HUGS hopes to recruit otologists to help restore hearing. In cases of bilateral microtia, where both ears are absent, doctors have thought about drilling through the bone to the hearing mechanism. “But you can put the facial nerve at risk, and it can be a devastating injury,’’ Hadlock says.

Silvia Velasquez, 22, was born without either ear and also wears a hearing aid. This is her fourth year back, and she took a five-hour bus ride to get here from the jungle. Velasquez has just lost her job as a hairdresser because she had to be at the hospital. “I worry about my job, but I worry more about my ears,’’ she says.

Children take it in stride
Each day, the surgical schedule starts at 8 a.m. and may not end until 10 p.m. As the senior surgeons, Cheney and Quatela, former president of the American Academy of Facial Plastic and Reconstructive Surgery, each oversee two operating rooms where the patients undergo general anesthesia. Hadlock takes the patients under local anesthesia, since she can speak to them in Spanish.

“Tienes dolor?’’ Do you have pain? “Estas haciendo muy bien.’’ You’re doing very well. Hadlock gets nods, an occasional question — and the middle finger from one boy who has had it with all the shots.

The team has long marveled over the stoicism of the children, who silently offer up their arms for intravenous lines. “We could never do this in the States,’’ says Hadlock, 40. “In the States, you’d be chasing them around the room.’’

Michelle Cevallos, 11, is back for her sixth visit, and her right ear is looking good. Her mother, Geoconda, pulls out Michelle’s straight-A report cards and explains that the girl wants to go to the police academy. “To do that, her hair has to be short,’’ says her mother. “So that’s why she wants her ear fixed.’’

A makeshift operation
In OR One, Sabini has made a 6-inch incision in a 7-year-old girl’s chest and is extracting rib cartilage. Cheney and Hadlock fashion a pocket on her head where the right ear will be implanted. The tension is broken by moments of levity and small talk. The steady beep-beep-beep of the monitor is broken by murmurs of doctors and nurses, and by oldies such as Roy Orbison’s “Pretty Woman,’’ courtesy of Sabini’s iPod.

Wearing headlamps and using a template made the first day, Cheney and Hadlock sit at a table and fashion the framework of an ear from the girl’s elastic rib cartilage. The human ear is 90 percent of its adult size by age 7, and these faux ears will grow slightly with the patient.

Because of the bone curvature, surgeons take cartilage from a right rib for the left ear and a left rib for the right ear. The right ear poses the biggest danger, because the left side of the chest is cut open. “Sometimes,’’ Quatela says, “you can see the heart beating.’’

The whole procedure takes about two hours, with an hour in recovery before the groggy girl is taken upstairs to spend a couple of nights. The gurney is ancient, and the American nurses have jury-rigged gauze strips to hold up the side rails. The HUGS team despairs that its patients can get little more than the Tylenol the team brought for post-surgery pain since there is insufficient round-the-clock nursing staff to monitor more serious medications.

The most challenging case this year is 7-year-old Jonathan Pazmino. In 2007, Jonathan’s right ear was severed and part of his cheek eroded in a bus accident. His surgery will take nearly five hours and include a skin graft from his thigh and an incision in his chest. Doctors open up a large area of Jonathan’s right cheek and scalp. The air smells of burnt flesh and tiny wisps of smoke arise from the cauterizer. “Here’s the artery,’’ Cheney murmurs. Bone, tissue, and muscle are exposed.

Cheney and Hadlock labor over a piece of vascular tissue that will allow the skin graft to take. But the tissue isn’t bleeding normally, and a blood supply is critical to the graft’s success.

At one point, four doctors have their heads together over the boy. Finally the blood vessels open up, and the team exhales. At 1:30, Jonathan is wheeled into recovery, his head one big bandage.

Overwhelming gratitude
Throughout the week, there are ups: promising stage ones, beautiful stage fours. And downs: a mother who won’t take no for an answer, even though her daughter is not ready for surgery; a boy whose new ears look a little low on his head.

The final morning, all patients return to be checked out. Sutures will be fixed, hematomas tended to, bandages replaced, and follow-up appointments scheduled with Dr. Patricia Jarrin, the Quito physician.

“Gracias’’ is the operative word. One boy gives Hadlock a chocolate lollipop. A girl asks for Missy Allen’s phone number. Hugs and kisses are exchanged. The parents have chipped in, and each team member is presented with carefully wrapped gifts: a small ceramic turtle, an Ecuador magnet, a Jesus keychain.

Patients and families settle in to plastic seats for a formal goodbye. Jonathan’s father, Nelson, a house cleaner, thanks the doctors for “allowing us to smile once again.’’

Michelle Cevallos has been working on her speech all week. Sporting a bandage over her ear and parrot-green fingernails, courtesy of the HUGS team, she says that she and many others were abandoned by their fathers, and sometimes their mothers, because of microtia. But HUGS, she notes, has never abandoned them.

“We are lucky to belong to this medical brigade and to share these unique and unforgettable moments,’’ she says. Her right ear, she tells the doctors, is made as much from the team’s TLC as from her own flesh and blood.

Bella English can be reached at english@globe.com.