Humanitarian effort alters lives

By Beverly Creamer
Advertiser Staff Writer

For the second year in a row, a humanitarian partnership has brought children from the Philippines to Hawai'i for life-changing surgery to repair facial deformities resulting from rare birth defects.

Dr. Willie Go relaxes with Jizzle Mae Carillo, 7, and her mother, Emily, and Jocelyn Leona, 14, and her mother, Georgina. The two girls are to undergo a delicate operation today and tomorrow at Tripler Army Medical Center. Jeff Widener • The Honolulu Advertiser

"The main objective is to observe what they're doing, what should be done in the postoperative care, and go back and set up our own cranio-facial center," said Manila anesthesiologist Dr. Willie Go.

"So instead of coming here, we can take care of patients there. We're hoping to have two or three patients a year in the pioneer project."

As 7-year-old Jizzle Mae Carillo goes into surgery at 7:30 this morning, Go, along with Philippine neurosurgeon Dr. Gap Legaspi and plastic surgeon Dr. Owen Loh will garb with the rest of the 12- to 15-member surgical team. The six- to 10-hour operation will remove frontal protrusions above the child's nose and use bone from her forehead to close a gap in her skull that had formed in utero.

"What it means for these kids, very simply, is the chance to look the way they feel and are inside, normal kids," said Tripler's Dr. Thomas Crabtree, one of three plastic surgeons on the medical team.

The plan is to follow Jizzle's surgery with that of 14-year-old Jocelyn Leona tomorrow. Both children suffer from a condition called frontonasal encephalocele, or brain hernia, that has been traced to prenatal malnutrition in Third World countries. While the condition occurs in one to three of every 100,000 live births in this country, it is seen in one of every 2,500 to 3,000 live births in the developing world.

The humanitarian effort, made possible by a retinue of more than 50 volunteers, is a partnership between Tripler Army Medical Center and the Defense Department, the Waimea-based World Healing Institute in Hawai'i on the Big Island and "Operation Smile," based in Norfolk, Va.

Tripler and "Operation Smile" physicians and other specialists are handling the immediate surgical and postoperative care while mental-health experts at the Waimea center will follow up with almost two months of emotional and psychological nurturing before the children and their mothers return to Davao in the Philippines.

"The whole idea required tremendous collaboration and communication among the hospital staff," said Dr. Robert Rubin, a California anesthesiologist who has come to Hawai'i as part of the medical team but also serves as chief medical officer for Operation Smile.

"That's part of why the Filipino doctors have come here — to observe how that takes place so they can gather the knowledge to set up a center in the Philippines."

While the doctors have done these operations themselves in the Philippines, they're here to learn about what would make a center work, Rubin said.

As the group gathered Wednesday on O'ahu for a few days of preparations — and light-hearted fun for the children — Jizzle and Jocelyn hugged and said they would be friends forever.

They both said they wanted the operations "to look normal," according to a translation by Go.

Jocelyn's mother, Georgina Leona, spent six years waiting for "Operation Smile" to give the go-ahead for surgery on her youngest child of five. But Jocelyn's father died of a heart attack several years ago, long before the family knew whether Jocelyn would be considered for the life-changing surgery.

"That was the only dream of her father before he died — that she would be operated on," translated Go.

The girls and their families met in the Philippines shortly before their departure for Hawai'i, but have also been briefed on what they might expect — including a month of headaches and vomiting in the aftermath of surgery — from families who were here last year.

The first three children — 11-year-old Nonel Lumahan, 9-year-old Mary Ann Monteroso and 8-year-old Ian Nakila — underwent the same operations at Tripler last July before recuperating on the Big Island for three months.

All three are doing well, said Karen Douglass, program director for the World Healing institute in Hawai'i and a licensed mental-health counselor. And there continues to be a tangible bond with the Hawai'i institute, with letters, packages and pictures going back and forth regularly.

"One of the things we said is the moon is everywhere, so when Nonel looks at the moon, he'll remember us, and when I look at the moon I'll remember him."

Douglass said the children became ambassadors of love in Waimea, partly because of their penchant for climbing together into a shopping cart at Foodland and calling out hearty "alohas" to other shoppers as she piloted them up and down the aisles.

Nonetheless, they and their mothers have had monumental adjustments, from being awash in feelings of sadness leaving Hawai'i, to seeing many positive changes in the way they're treated in their communities.

"They arrived with a small suitcase and went home with over 225 pounds of stuff," said Douglass.

"Nonel's mother said 'I cry when I think about being there. There I was special. Here I'm not,' " said nurse Jae Termeer, program director for the institute in the medical sphere.

Douglass said the program's psychological components hope to deal more fully with integrating this experience into the families' lives, by emphasizing this is "a special time in their lives" to look back on and draw strength from, rather than comparing it to their day-to-day lives back where they live.

"We tell them it's normal to feel a little sad when they go back."

But the families have been a strength for each other, and have come together at Christmas, and sent pictures back to Hawai'i to show their new lives.

"Nonel's mother says he's really happy," said Douglass. He's the only one of the three who returned to school this year — to new celebrity status. The two others are taking a year off at the request of their schools to make sure there are no medical complications.

The fact that the three surgeries last year were so successful and the families so warmly embraced has smoothed the way for this latest group, said Alletta Bell, founder and president of the World Healing Institute in Hawai'i and a part-time Big Island resident.

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