New faces, new hope for children
By Kevin Dayton
Advertiser Big Island Bureau
WAIMEA, Hawai'i — From the back of the recovery house set in an expansive grassy yard came the sound of children singing out in the Filipino dialect of Visayan.
The kids were definitely feeling better, and from the sounds of the giggling, someone was either wrestling or being tickled.
Before their operation Mary Ann Monteroso, Nonel Lumahan and Ian Nakila couldn't wear glasses. Two months after the surgery, below, it's a style option.
Top: Advertiser library photo. Above: Tim Wright • Special to The Advertiser
Two months after undergoing major surgery to remove large protrusions from their faces, three youngsters from the Philippines are about ready to return home with new looks and better prospects.
They will be wearing sunglasses when they go, which was impossible for the three before surgeons removed the large fleshy lumps from their nasal areas. Until the operations, the protrusions on their faces made it impossible to wear glasses.
The surgeries will be a life-changing experience for the youngsters, who each developed strategies to cope with teasing or harassment because of the way they looked.
Mary Ann Monteroso, 9, became the smartest girl in her class. Ian Nakila, 8, became the funniest. And Nonel Lumahan, 11, became the outgoing and friendly fellow.
Lumahan said he is excited to be returning home to show off his new look to his best friend and his older sister.
The mothers of the children said the youngsters touch the spaces where the protrusions used to be, as if looking for the missing flesh, and are pleased with what Nonel's mother, Shirley Lumahan, called "the new face."
The operations and a stay in Waimea to allow the children time to recover were paid for by the World Healing Institute in Hawai'i and Operation Smile, which is based in Norfolk, Va. Operation Smile was started by Dr. William Magee, a plastic and reconstructive surgeon.
Experts say frontonasal encephalocele is relatively common in Asia, occurring in about one out of 2,500 to 3,000 live births. Malnutrition is a risk factor associated with the condition, which occurs in one to three of every 100,000 live births in the United States.
In 21 years, Operation Smile has provided free surgery for 70,000 children in 21 nations. Most of the surgeries have been to repair birth defects such as cleft palates and cleft lips.
Frontonasal encephalocele
Part-time Big Island resident Alletta Bell started the World Healing Institute in Waimea more than a year ago to provide psychological support for the children.
The surgery was complicated, and the recovery was more grueling than anyone expected.
The children's condition is technically known as frontonasal encephalocele, and creates a prominent "bubble" on the children's faces. The condition is not life-threatening, but can destroy the youngsters' chances to grow up, marry and live a normal life without stigma.
In each operation in late July, a team of doctors at Tripler Army Medical Center removed the frontal protrusions between their eyes. Surgeons then took bone from the children's foreheads to close gaps in their skulls where the bone failed to form properly during early pregnancy.
For Nonel, doctors at Tripler Army Medical Center worked for more than 10 hours to remove the protrusion from his face, rebuild the boy's eye sockets and reposition the eyes 1 1/2 inches closer together.
Tim Wright • Special to The Advertiser
The surgery was followed by a month of headaches that were so severe the youngsters reacted by throwing up.
Ian Nakila, center, is shocked that his friend Nonel Lumahan, left, knows how to make a shaka sign as Mary Ann Monteroso looks on at the World Healing Institute Garden of Memories in Waimea.
Their caregivers with the World Healing Institute in Hawai'i took special note of the day about a month after surgery that none of the children was physically ill for a whole day. That was a major milestone, because it meant the kids could begin to enjoy activities such as a day at the beach or a horseback ride at Parker Ranch.
For Ian, who had to undergo two follow-up operations, the recovery was even harder.
With the tumor gone and the space in his skull closed, pressure began to build up after the first operation, said Jae TerMeer, a program director for the institute.
This caused long-lasting headaches that became so severe that it caused some swelling of the optic nerve, and he began to lose some vision, TerMeer said. He also suffered seizures.
In two follow-up operations, surgeons inserted a shunt, or valve, in his brain to release fluid from his skull when pressure builds up, she said.
The result was dramatic relief for the boy.
In the past Ian was sometimes sent home from school three times a week because he was throwing up, and institute staff suspect the cause was headaches. Now, they believe for the first time Ian is free of headache pain.
Along the way, small kindnesses by strangers touched all three families. Hotel employees in Honolulu pooled their money to buy a big stuffed animal and a gift basket for Ian to try to cheer him up and ease a bit of his suffering.
Much of the follow-up care provided to the children in Waimea was donated by Big Island practitioners. People donated toys, money, chocolate and blankets. At a farmer's market, vendors insisted the mothers take free vegetables.
"People just went out of their way, and they aren't making that much money themselves," said Karen Douglass, another institute program director. "It's just incredible what people did."
Nonel and Mary Ann were expected to be in Manila this weekend on their way home. Ian, who is still weak and is on steroids, is expected to return home in about two weeks.
Reach Kevin Dayton at (808) 935-3916 or kdayton@honoluluadvertiser.com.
