THE VIRGINIAN-PILOT
Copyright (c) 1995, Landmark Communications, Inc.
DATE: Monday, June 26, 1995 TAG: 9506230136
SECTION: DAILY BREAK PAGE: E1 EDITION: FINAL
SOURCE: By DIANE TENNANT, STAFF WRITER
LENGTH: Long : 326 lines
On May 9, The Virginian-Pilot and The Ledger-Star published a story about the life-altering surgery to remove a facial hernia from Agustina Disuma, a Filipino child, by doctors from Operation Smile. Since then, a reporter and photographer have tracked ``Tina's'' progress in returning to normal life.
The shy child who stepped off the airplane at Norfolk International Airport on May 2 kept her eyes on the floor, avoiding the stares of strangers.
If Agustina Disuma could have managed it, she would have shrunk through the floor to keep people from staring at the baseball-size hernia on her forehead.
Wow, thought Joe Ubial as he watched his guest approach, can the doctors at Operation Smile really take that thing off?
For 15 years, ``Tina'' had borne the birth defect that arose from a nickel-size hole in the bone of her forehead, allowing brain tissue to bulge out until it dangled between her eyes. She dropped out of school after the sixth grade because she couldn't endure the stares anymore. She hid in her dirt-floored home on the Philippine island of Mindanao, doing household chores that kept her out of sight and, she hoped, out of mind.
In February, the doctors of Operation Smile offered to change her life. We'll take you to Norfolk, they said, and take the hernia off for free.
Now Ubial, who had offered to let Tina stay in his Virginia Beach home during her visit, was dubious. How could this child ever have a normal life?
MAY 8
TINA WAS FRIGHTENED going into surgery at Children's Hospital of The King's Daughters, trembling violently. As she went to sleep in the operating room, Dr. William Magee, a plastic surgeon and co-founder of Operation Smile, kept tabs on her. ``If she were born in the (United) States, this would have been taken care of when she was maybe 3 months old,'' he said. ``For 15 years, she had absolutely no chance of a normal life. Here, in about six hours, she'll go from a recluse to a normal life.''
``She's gonna be a happy girl, isn't she?'' asked one of the nurses. ``Can you imagine, waking up and looking at yourself in the mirror?''
The neurosurgeon, Dr. Tom Penix, made his first incision.
Over the next several hours, surgeons would peel Tina's facial skin forward, remove part of her skull, amputate the hernia, rebuild the bones of her nose and forehead, draw her eyes closer together and put her face - a brand new face - back in place. Tina was on her way to a new life.
MAY 10
THE MIRROR was not Tina's friend in the days after surgery. The shy teen refused to look at herself, or at the scar that ran down one side of her nose, and the strip of shaved scalp. Finally, two days after the operation, she took a peek.
No reaction. Her well-wishers wondered if she was still, in her mind, seeing the hernia. Many children do, Magee said.
When Tina left the hospital, just four days after surgery, her eyes were still downcast. But her recovery had begun.
MAY 14
MOTHER'S DAY. The rain was pouring down on St. Matthews Catholic Church on Mother's Day. Tina sat among the worshippers with the Ubial family and her Catholic escort from the Philippines. Her head was bowed, more from pain than devotion.
Tina, the daughter of a Muslim couple, was trying to keep her stomach under control. Less than a week had passed since surgery. Severe headaches plagued her. She had to keep wiping away the fluid that seeped from her brain cavity down her nose. Her medicine, Tylenol with codeine, upset her stomach.
``Have mercy on us all,'' the congregation sang.
The escort, Gloria Linaac, looked down at Tina, concerned. The child was in Linaac's charge during her time in the United States.
Linaac, a member of the Kiwanis Club International in Iligan City on the Philippine island of Luzon, had left her own family and her job as office manager of a cable television company to travel halfway around the world with a girl she had only just met. The Kiwanis Club was Tina's sponsor, and Gloria was her surrogate mother.
``I give you a new commandment: Love one another,'' the priest read from the Bible.
Gloria whispered a question to Tina. The priest read the story of the apostles Paul and Barnabas, who ``went all over the world, spreading good news. Then they returned to their homeland, and there they witnessed all that God had done.''
Tina closed her eyes.
``For our sick. . . let us pray to the Lord. For those who show their care for others. . . through medical care. . . let us pray to the Lord.''
Tina swayed sideways in her seat. Gloria put her arms around the girl, and helped her outside. In the rain, in a flower bed, Tina vomited.
Gloria hustled her into the Ubial family car and, her face furrowed with worry, took Tina away.
MAY 18
FOR HER NEXT excursion, Tina took a pillow. The charter bus left Norfolk at 6 a.m. for an eight-hour trip to New York City. On board were 32 doctors from 13 countries - doctors who were training, through Operation Smile, to provide free surgeries on children in their own lands.
This was gravy. A three-day trip to New York with two glittering fund-raisers for the medical charity. Gloria was excited. Tina still had headaches.
As the bus rolled up the New Jersey Turnpike, Dr. Magee cranked up a CD player. ``I gotta get you guys ready for New York,'' he announced. ``If you walk into New York like this, you're in trouble. Gotta get your energy level up.''
The music veered from Filipino dance tunes to Janis Joplin. Wynonna Judd. ``The Electric Slide.'' As the bus crept into the Lincoln Tunnel, Magee led the group in hand-and-arm motions to spell the title to ``YMCA.''
``We're here! New York!'' Gloria exulted as she stepped off the bus. Tina hugged her pillow.
``Hi! You feelin' all right?'' an Operation Smile staffer asked Tina. The girl nodded quickly, and a smile flickered across her lips, but Tina kept her eyes on the sidewalk.
``Come on, give her a big smile!'' Gloria urged. But Tina was too shy. A hairy-legged man wearing a yellow chicken costume plodded up and tried to hand Tina a flyer advertising ``Fat Guys Wings.'' Tina ducked her head and looked away.
A few hours rest in the hotel, and Tina appeared in a black velvet blazer and white lace anklets, on her way to the first fund-raiser. Determined to show her gratitude to Operation Smile, Tina pushed herself to attend, wanting to see America, wanting to help raise money for the organization that brought her here.
``Ooooh, exciting!'' Gloria exclaimed. ``But my `daughter' here, she's not very happy. I wish she felt better so could smile and smile. Smile with mucho gusto.''
``Is she feeling better?'' asked a staffer.
``A little vomiting, a little headache.''
``Still?''
Tina shivered, hugged herself, and climbed on the bus.
A short while later, she walked quietly into the Intrepid Sea Air Space Museum, an anchored aircraft carrier, and sat down at a table. Among the likes of Joan Rivers, John F. Kennedy Jr., Rockefellers and the ambassadors of five nations, Tina lay her head in Gloria's lap.
``She needs to rest,'' Gloria whispered to Kristin Atkins, Operation Smile's domestic program coordinator. NBC News was covering the event, and a camera crew followed Dr. Magee as he came into the room to check his patient.
``Feeling lousy?'' he asked, setting his drink on the table. ``Tina, let me see, hon.'' Magee felt her forehead. No fever.
It's just the after-effects of surgery, he said. Headaches are common after brain surgery. And the pain medication may be upsetting her stomach. Has she eaten much today? No? Her blood sugar is low, then, and that's not helping things. Let's find a place for her to lie down, he suggested. The camera crew followed him out of the room. Tina, still seated at the table, closed her eyes again.
``Do you know if we can get some food?'' Atkins asked a waiter who was taking drink orders around the table. He looked doubtful. ``I'll go ask,'' he said.
``I'll go ask if you want me to,'' Atkins offered.
``No, I'll do it,'' the waiter said. Two gin and tonics, nothing else?'' He left the room.
The French rolls he brought back did not appeal to Tina. But she sat up and chewed resolutely even as she wished that she had some soft bread, like she was used to in the Philippines. A procession of donors filed in and out, looking at Tina and exclaiming over her surgery.
``Does she want to go home?'' Atkins asked.
``She doesn't even want to go home,'' Gloria replied. ``I gave her Tylenol but after 30 minutes, it's this again.''
``She's sick again?''
``It's not her stomach, Kristin, it's her head.''
Tina, lying again in Gloria's arms, began to tremble. Gloria hugged her tighter, while worry lines crept across her forehead.
A waiter came to escort them to the museum director's office. Tina passed through the well-dressed crowd, between a TV reporter and her camera crew, through the kitchen. In the office, she lay back in a chair, and Gloria tucked a blue tablecloth, the only wrap she could find, around the girl's shaking legs.
``Tina, Tina!'' she called, her voice breaking despite the doctors' assurance that her charge wasn't really ill. Half a world away from home, responsible for a sick child not her own, Gloria snuggled Tina's legs against her own body, and cried.
The band on the dance floor struck up ``In the Mood.''
An hour later, Tina awoke from her nap and felt well enough to join the dinner crowd. Marianne Hardart, a volunteer with Operation Smile's New York chapter, spotted JFK Jr.
``There's an Operation Smile patient who's dying to meet you,'' she told him. Kennedy came over to Tina's table.
``Nice to meet you,'' he said.
Tina tried to stand up but swayed, dizzy. Kennedy put his arm around her shoulders and helped her sit down.
In the front of the room, donors were pledging money to pay for children's facial surgery. Waiters swirled between the tables. Tina laid her head where her plate should be and closed her eyes.
MAY 19
THE NEXT DAY was supposed to be devoted to sightseeing, but Tina kept to her bed. Gloria, disappointed but determined not to neglect her duty, stayed with her. That evening's fund-raiser was at Liberty Science Center, a children's science museum in New Jersey. Tina showed up gamely, determined to demonstrate her gratitude to Operation Smile.
She was not feeling well enough to look at many exhibits, but when her companions urged her to play, she obligingly stepped between two columns that measured height.
``You seem to be about 10 foot 4,'' a synthesized voice told her. ``Oops, I blew it. You seem to be about 4 foot 10 inches high.''
Tina, who understood more English than she could - or would - speak, grinned.
``She's smiling!'' Gloria exclaimed, clapping her hands together. ``Oh, I'm happy!''
But half an hour later, Tina retired to the museum offices to lie down. She ate, vomited, ate some more, napped. Gloria fretted over her, repeatedly kissing her hair, and stroking her head.
Again, the nap made her feel better, and she slipped into the museum's IMAX theater to watch donors present checks to Operation Smile - $32,000, then $3,500, then $150,000.
``Wow,'' Tina whispered.
Magee told the audience about the Op Smile mission where he had met Tina. We took care of 825 kids in five days, he said. We turned away 1,200.
Tina, one of the lucky ones, hugged herself as she listened.
MAY 26.
When Tina began feeling better, her host family, the Ubials, filled her days with entertainment the likes of which the reclusive teen had never seen. Strawberry picking. Crabbing. Shopping malls. Dinner parties. Movies and games of Scrabble.
Tina, one of six siblings from a remote mountain village, watched ``Forrest Gump.'' The child whose parents walked five miles to sell sweet potatoes in a market, who took in laundry from wealthier neighbors, picked up a Walkman and some athletic shoes.
She learned to look at strangers before she looked away. She even smiled shyly when a nurse at Dr. Magee's office asked her, ``Are you pleased? Are you happy with how you look?''
The scar was fading. A dimple remained on her forehead, the only evidence of the dangling hernia once there. Tina wore a headband to cover the stitches in her scalp.
``You OK?'' Magee asked, as he examined her face. Tina answered in her native language.
``What'd she say?''
Joe Ubial interpreted. ``She's scared.''
``Tell her not to be scared. If I hurt her, tell her to punch me.''
Ubial shook his head slowly in disbelief. ``It's amazing. Absolutely amazing. When I first saw her at the airport, I said, `Whoa, can this be taken out?' But when I saw her after the operation, I said, `Wow, what a transformation.' ''
``You know,'' Magee answered, wiping some dead skin off the scar, ``the amazing thing, the transformation, is watching her grow back to a normal life.''
Tina peeked apprehensively in the mirror.
Magee turned to removing loose scabs from her hair.
``I'm afraid to touch those,'' Gloria confessed.
``Be not afraid,'' Magee said. ``That's what Pope John Paul said when he visited the Philippines. But you're Muslim, aren't you, Tina? You don't listen to Pope John Paul. I bet Allah said, somewhere, `Be not afraid.' Look at me here. Smile.''
Tina beamed into his face, and threw her arms around him.
``Thank you,'' she said in English. ``Very much.''
JUNE 11
THE TINA who walked tentatively into Busch Gardens was not yet ready to be very open with strangers. She talked and joked with Gloria and three companions, but she still ducked her head when passing through the crowd.
``So, what do we do first?'' Gloria asked Joe Ubial Jr. The Loch Ness Monster rumbled overhead.
Tina covered her mouth with one hand and her eyes grew wide as she watched the roller coaster. ``Oh, my God,'' she whispered.
Gloria nearly passed out on the ride, but she was game for the Battering Ram. The ride whooshed over Tina's head. ``Oh, my God,'' she whispered again.
A country dance show caught Tina's eye, though, and she tapped her foot lightly in time to the music, bouncing her shoulders back and forth. The wind caught her hair; she wasn't wearing a headband anymore.
The cable cars, the carousel. ``I like,'' Tina approved.
She laughed out loud when the Festhaus German dancers began slapping their legs and feet. By the end of the day, her arms were filled with toys her American escorts had won from arcade games: stuffed whales, plush basketballs, a dog, pink elephants. Tina smiled all the way to the parking lot.
JUNE 20
IT WAS A different child who entered the Norfolk airport, waiting for Northwest Airlines to take her back to the Philippines.
Tina smiled and laughed, oblivious to the strangers who also waited at Gate 30. And for the first time in Tina's life, they were oblivious to her.
The scar down her nose was fading. The ``Virginia is For Lovers'' sweatshirt melted into the casual crowd around her. Tina grinned straight into the camera lens for picture after picture, a happy teenager ready for adventure: San Francisco for three days, Disneyland, and then home.
``You all right?'' Gloria asked her. Tina smiled and nodded. Yes. Definitely.
The boarding ramp opened, and Tina grabbed her duffel bag, where some Mickey Mouse shorts peeked out through a small tear. One last wave, and Tina was gone.
Joe Ubial lingered a few minutes, looking at the empty door and the plane, thinking of the child he had first seen six weeks earlier. He looked at his family, then back at the door.
``She is,'' he said, ``one lucky girl.'' MEMO: Operation Smile International is a Norfolk-based non-profit
organization that provides medical services to indigent children and
young adults. Through the work of its volunteers, Operation Smile has
provided reconstructive surgery and related health care to 23,000
children and young adults in the United States and to 14,500 children in
13 other countries since its start in 1982. A dental clinic in Norfolk
has seen 950 patients since it opened in 1993.
ILLUSTRATION: Color photos by Joseph John Kotlowski, Staff
Tina Disuma, 15, before the eight-hour operation
Tina, second from right, and her Kiwanis club sponsor, Gloria
Linaac, brave New York during an Operation Smile trip to promote the
organization
Tina after surgery; her scar should be almost invisible after six
months
Left: Tina, who used to avoid looking at herself, gazes at her new
image in a funhouse mirror
Above: On a trip to Busch Gardens a month after her operation, Tina
begins to enjoy the world
Ten days after surgery, Tina still felt queasy. Here she is
comforted aboard the Intrepid, a retired Navy ship and floating
museum in New York City
Dr. William Magee checks Tina's stitches at his Norfolk office,
while Joe Ubial and Gloria Linaac look on
Minutes before Tina departs for the Phillipines, she is hugged by
Lodi Ubial
by CNB