New life for kids starts here

By Beverly Creamer
Advertiser Staff Writer

Ian Nakila, 8, and his mother, Marilou Nakila, traveled from the Philippines to Hawai'i so he could undergo surgery to correct his facial deformity caused by a birth defect. Ian's underwent surgery shortly after this photo was taken. Bruce Asato • The Honolulu Advertiser

The six- to eight-hour surgery — performed by a team from "Operation Smile" based in Norfolk, Va., along with Tripler staff and private practitioners volunteering their time — is the last of three operations to remove "brain bubble" birth defects that radically deformed the child's face.

In separate surgeries yesterday, Mary Ann Monteroso, 9, and Ian Nakila, 8, had frontal protrusions removed from between their eyes in delicate operations that borrowed bone from their foreheads to close gaps in their skulls that had formed in early pregnancy.

"My parents blame me," said Sherly Lumahan, whose husband died during the first three months of her pregnancy with Nonel. "(They say,) 'What is the future of that child when he grows up?' I don't know.I cry and cry."

Today is a dream come true for the families. Although the deformities are fairly routine to repair in an operating room like the ones at Tripler, there was little chance to correct the birth defects in the rural Philippines, where the need for medical care is high and the means are often far beyond the reach of low-income families.

For five years in a row, Ian's mother, Marilou Nakila, took him on the 35-mile bus ride from her village into the city of Davao for "Operation Smile" visits from doctors headquartered in the United States. For five years she had been turned away because doctors were unable to undertake the delicate surgery and follow-up care in their makeshift surroundings during their two-week visits.

"They said, 'Don't hold out hope,' but she kept coming back,' " said Jae Termeer, a nurse with the World Healing Institute. The private foundation on the Big Island and "Operation Smile" are footing the bill to bring the children to Hawai'i and will oversee three months of recovery that includes an emphasis on their emotional well-being.

In some Third World countries, families consider such afflictions a curse and hide their children. Some have been found shut up in sheds, Termeer said. Most children with frontonasal encephalocele — or brain hernias — have been doomed to lives without hope of marrying or following their personal dreams. While the condition is not life-threatening, it's life-impairing.

Before and After: Plastic and reconstructive surgery can achieve dramatic results. The first photo shows a child from the Philippines with a facial deformation known as frontonasal encephalocele. Photos courtesy Operation Smile

Statistically the condition occurs in one to three of every 100,000 live births in the United States, said Lt. Col. Thomas Crabtree, a plastic and reconstructive surgeon at Tripler who was a member of the children's surgical team and has been involved in many "Operation Smile" missions. But in the developing world, he said, it occurs in one of every 2,500-3,000 live births.

Mary Ann and Ian came through yesterday's operations with a hearty thumbs-up from doctors and were recovering well in the intensive-care unit, with their mothers close at hand.

"Both kids did wonderfully," Crabtree said yesterday as surgeons completed the operations just before twilight. "It went very smoothly and it looks great. My guess is they're going to be drowning in stuffed bears now."

Ian had ventured a peek in the mirror and, though his nose is heavily bandaged, he was aware his face had changed.

"Mommy, the bump's all gone. Where did the bump go?" he asked in his native Visayan.

His mother had tears in her eyes as she hugged and thanked the plastic surgeons, nurses and Dr. Leon Liem, the neurosurgeon who handled the delicate job of repositioning tissue within the children's skulls and removing built-up scar tissue.

"In one operation, we can change their life forever," said Dr. William Magee, an "Operation Smile" co-founder, along with his wife.

Maj. Daniel Hall takes pre-op measurements of patient Nonel Lumahan, whose surgery was scheduled forthis morning. U.S. Army

"It didn't start as any great altruistic mission," said Magee, who, together with Tripler's Crabtree, is heading the children's surgical team. "But what we saw there changed the direction of our lives.

"Three hundred people came out and we could take care of 40 children and the rest we had to send away. So we said, 'Let's get some friends and we'll come back and take care of the others.' But the next year we had to send another 250 away. So we kept raising money, and our friends told their friends, and along the way it just really started to happen."

As the growing organization expanded its reach to Colombia, Kenya, Liberia, Vietnam, India and many more areas, Magee saw a need to bring the more serious cases to the United States.

"We saw kids with just terrible problems that we couldn't take care of locally," he said. "And in the mid-1980s we started bringing them to the U.S. "The reality in a developing country is there's nobody to take care of them."

By the 1990s DuPont heiress Alletta Bell had also become involved, had gone on several missions herself as an all-around assistant and began to see the need for an emotional underpinning to the physical changes in the children. As a part-time resident of Waimea on the Big Island, she launched the World Healing Institute there in the past year and began laying the foundation to provide that psychological support.

Although this new partnership between the Defense Department, "Operation Smile" and a private nonprofit is unique, this is not the first time Hawai'i doctors have brought needy patients to the

Islands for critical surgeries. The locally based Aloha Medical Mission does similar work on a smaller scale, with volunteer doctors also taking their skills to Southeast Asian and Pacific nations.

On Friday, as the families were gathering their strength for the coming surgeries, the children tiptoed in the waves in front of their Waikiki hotel, growing braver by the minute and chattering in delight. Nonel and Ian picked up handfuls of seaweed that they then excitedly tossed into the waves slapping the beach, with Ian begging to go swimming.

As they gathered their strength for upcoming surgery, Mary Ann Monteroso, 9, Nonel Lumahan, 11, and Ian Nakila, 8, got to frolic along the shoreline fronting the Waikiki hotel where they were staying with their families. Such play and joy will be the key to post-op healing, too. Bruce Asato • The Honolulu Advertiser

"Play and joy and laughter and love are key to healing," said Maggie McIlvaine, director of healing for the World Healing Institute.

The children and their mothers were flown to the Big Island a week ago for the start of a three-month program of pre-operative testing and post-operative recovery. Though they didn't know each other before they were brought together for the flight, the youngsters have formed their own buddy system, said Magee, and it led to a camaraderie that is beginning to create a greater sense of openness in each.

Though they have all been teased at school — Nonel's classmates called him "testicle face" and he'd spend most of his time indoors — they're good at sticking up for themselves, with little Mary Ann once declaring to tormenters who did poorly in school: "But I'm smarter than you are."

Hawai'i has done something else for each child. Because of their experiences so far, Mary Ann is more determined than ever to become a nurse, said her mother, Maria Ditas Monteroso, and both boys want to be doctors.

Why? Nonel's mother replied, "Because he wants to help people who are sick."

Reach Beverly Creamer at bcreamer@honoluluadvertiser.com or 525-8013.