Gigantiform cementoma brought horrible tumors to Noventhree's face, but it did not take away the innocence of this five-year-old boy. Knitted eyebrows mean that he is thinking and a slightly opened mouth expresses his happiness.

He flew with hope from Batam Island, Indonesia, to Hualien Tzu Chi Hospital for a chance to remove the tumors and reshape his face. The next time you see him, he may appear different--bigger eyes, better nose, and a fine chin--so make sure you still remember him!

After bidding farewell to his mother, younger brother, and homeland on March 8, Noventhree Siahaan flew to Hualien Tzu Chi Hospital, accompanied by his father, P. Baringin Jaya Siahaan, and Tzu Chi Singaporean volunteers. They were hoping to fulfill a long awaited dream--the opportunity to change his face.

His father had tried hard to find a cure for his son's disease, but their financial situation restricted them. So Noventhree's disease was left to develop until Tzu Chi volunteers came knocking on their door one fateful day.

A baby boy

Noventhree was a normal baby from the time he was born in Batam Island, Indonesia, in 1998. Shortly after his first birthday, his parents sent him to his grandparents in Medan because both of them were busy at work. But when the boy returned nine months later, his parents were unable to recognize him.

At the harbor that day, the grandmother was holding the boy with his face covered by a cloth. His parents were delighted to welcome him back, but when they removed the cloth, their happiness shattered like broken glass--the boy before them had tumors on his face that were so huge that his eyes and nose were compressed and deformed. His gums were exposed from his mouth and suffered from extreme protrusion. His face had the resemblance of a hippopotamus.

The mother started crying and the father shook his head and asked, "Is he our baby boy?"

"Yes, he is. Why would I lie to you?" The grandmother replied gravely.

The couple couldn't believe what they saw and couldn't accept the fact for several days. But one day as they were looking at their innocent baby, their natural love as parents flared up. Baringin stated, "It's nobody's fault that he has turned out this way. He's still my son!"

As Noventhree grew older, he became smarter and more sensitive, but stubborn. He knew he looked different, so he always remained wary of strangers and would yell if any tried to approach him. The tumors in his mouth prevented him from talking clearly, but he could still make deep, indistinct utterances that only his parents understood.

Seeking medical help

For years, Baringin took Noventhree to doctors all over Indonesia. Some said the tumors were caused by high fever, and some said they were caused by calenture (a fever formerly supposed to affect sailors in the tropics). Doctors drew blood from him for tests, but they never had any answers to the problem. They gave various explanations, but none of them could really help. Baringin felt helpless.

When Western medicine didn't work, Baringin sought traditional medicine. Both father and son went to many places to find traditional medicine doctors and folk remedies. They took 13-hour boat rides, went through countless bus transfers, and climbed through many mountains to find a witch doctor to treat the boy's problems.

"I saw a witch doctor soak his two hands in a boiling pot of oil, and then he smeared my son's face with it," said Baringin. The action might have seemed imprudent, but since they had no other solutions, they could only believe that it would help.

In a year's time, the tumors on Noventhree's face had continued to grow to the point where they almost covered his entire face. His eyes became hidden, his nose had become just two little holes, and his gums were completely exposed. He suffered constantly from fever and inflammation; his mouth and nose festered, bled, and emitted foul smells from time to time.

His parents were anxious but powerless. Baringin explained, "Even the doctors wouldn't dare treat him. What else could we do?"

Baringin earned US$118 a month as a construction worker. While it was enough to cover their basic needs, it was not enough to send Noventhree to a major hospital because of the enormous medical fees.

Baringin felt helpless and tormented. He tried to maintain his spirit at work, but he was often lost in thought. When he went back home and saw Noventhree, he would hug him and cry.

Saved at the critical moment

When Baringin's supervisor found out about his problem, he tried to find a charity group to help. At the end of 2003, Tzu Chi Singaporean volunteers were holding a social event on Batam Island. When someone handed over Noventhree's photo to the volunteers, they exclaimed in surprise, "We've been looking all over for him!"

The story started back in September 2002. Baringin took Noventhree to a Tzu Chi free clinic on Bantam Island, but the site had not been set up yet. A doctor told Baringin to bring the boy back the following day. However, Baringin misunderstood and thought the doctor had told him not to bring the boy back at all!

Because of this misunderstanding, the volunteers lost contact with Noventhree. Since then, they had been trying to find the boy, but to no avail. Who knew that they would be destined to see Noventhree again?

On February 7, volunteers visited Noventhree's home for the first time and verified that the boy was the missing case from more than a year before. A week later, on February 15, the volunteers went to the boy's home again to take him to Awal Bros Hospital on Batam for a CT scan. When they got there, Noventhree was sitting in front of a loud television set. When he heard their sounds, he slowly turned around. A few volunteers who were seeing Noventhree for the first time were shocked and speechless!

Noventhree's mother said to the volunteers, "Ever since you left last week, we've been waiting every day. Now that you're here, I'm full of spirit and hope." Baringin tearfully kept thanking the volunteers.

When the doctors from the Singapore chapter of the Tzu Chi International Medical Association (TIMA) saw the CT scan images the following day, they felt that surgery would be very risky and might damage the boy's growth and linguistic ability. Liu Chi-yu, CEO of the Tzu Chi Singapore branch, sent the images back to Tzu Chi headquarters. Doctors at the Hualien Tzu Chi Hospital saw the images and also felt that it would be a risky operation to the boy, but it was still worth a try.

"It would be best if the surgery turns out to be successful, but God has the final say," said Noventhree's mother. She understood the risks and difficulties involved. She continued, "However, my boy won't have any chance if he doesn't go to Taiwan. If he does, at least he will have that slim ray of hope."

The volunteers also tried to counsel her: "He is not only your child, but also the child of all Tzu Chi people. Let us pray together for him."

A journey of hope

On March 7, Baringin and Tzu Chi volunteers from Singapore accompanied Noventhree to Taiwan.

Hualien Tzu Chi Hospital formed a medical team consisting of physicians from the departments of otolaryngology, plastic surgery, pediatrics, pediatric surgery, anesthesiology, radiology, oral surgery, ophthalmology, and physical medicine and rehabilitation, with Vice Superintendent Chang Yao-jen as the head coordinator. The doctors had already held five preparatory meetings before the boy arrived.

Noventhree underwent many examinations, including x-rays, cardiograms, angiography, PET scans, MRI scans, and pathological sections, with doctors concluding that he suffered from Gigantiform cementoma. These tumors would grow as the patient aged. There are less than 100 cases of this around the world, with Noventhree being the youngest patient.

There are four tumors on Noventhree's face, which have all caused serious problems. His right eye has been compressed to the point of causing loss to his vision. The mucous membrane inside his mouth has become seriously infected with slight septicemia (invasion of the bloodstream by virulent microorganisms). Two-thirds of his lower jaw has been damaged. His respiratory track has been impacted to the point that he can't breathe normally. His gums are completely exposed and suffer from extreme protrusion such that he can't chew with his teeth; he suffers from malnutrition and iron-deficiency anemia. And the list goes on...

Deputy Superintendent Chang pointed out that if the tumors were not removed completely, they would grow back. Noventhree's tumors had grown to the same size as his head; if they were all removed at once, he would not survive the surgery. Furthermore, there would be large holes in his face after the operation, it would be hard to reconstruct his face, and there would also be a great possibility of infection. However, if the tumors were removed one at a time, the remaining tumors would grow as time passed, making the treatment period longer.

All of these problems challenged the collective wisdom of the whole medical team.

Accepting the challenges

The tumors on Noventhree's face had impacted his respiratory track such that he couldn't breathe properly, so the first priority was to perform a tracheotomy. On the second day after he arrived, an otolaryngologist carried out the surgery and inserted a nasogastric tube in him to allow for feeding. A physical therapist also fashioned a tailor-made neck support to support his head since the tumors weighed so much. The neck brace also prevented the tracheotomy wounds from being constricted.

Noventhree weighed only 13 kilograms [28 pounds], so the nutritionist prepared high-calorie liquid supplements along with many vitamins. Noventhree was fed 130 cc of it every four hours in the hope that he would become healthier soon and would be ready for the surgery.

Three weeks after he was hospitalized, Noventhree's health improved. He underwent his first operation on April 1 to remove the tumor on his upper left jaw so that it would not impact his left eye and damage his eyesight.

At 7:50 a.m., Noventhree was pushed into the operating room and was anesthetized and disinfected. At 8:10, a central venous catheter was inserted. Dr. Peng Hai-chi, director of pediatric surgery, commented that the veins in a child are quite narrow, so it is not easy to insert a needle into the veins. Once the central venous catheter has been inserted, the staff can use it to transfuse blood during the surgery or to supplement nutrition and antibodies after the surgery.

At 9:30, Director Chen Pei-jung of otolaryngology led the medical team in performing the surgery with a KPT laser knife, and at 11:40, the tumor on his left upper jaw was removed. Then Dr. Li Chun-ta and his plastic surgery team carried out a skin flap surgery to create the left side of his nose. Director Peng Hai-chi conducted a gastrostomy. Dr. Peng said that Noventhree had wounds in his mouth, so to prevent infection from food intake, he made a hole in his stomach so that highly nutritious food could be directly poured into his body. The whole surgery lasted for six hours and was over at 2:25 p.m.

After the surgery, the upper left side of Noventhree's face became flat and the left side of his nose appeared. The first phase of the "face-lift" was successful. Originally, his left eye had been squeezed into a tiny slit, but now he could open it and see the world clearly.

His father's affection

Two weeks after the first surgery, Noventhree had recovered well, so they proceeded with the second operation on April 15 to remove the large tumor on his chin. The difficulties and risks were much higher than the first surgery.

The operation lasted for seven hours, starting at 8:30 a.m. and finishing at 3:25 p.m. The medical team removed six slices of tumor that weighed a total of 680 grams [23 ounces], the largest one being 12 centimeters [over 4 inches] long. Because the surgery covered a much larger area this time, Noventhree bled a lot and thus had to receive transfusions of 900 cc of blood.

Dr. Chang remarked that because they had simulated the procedure beforehand with every department working together, the two operations were carried out as planned. Since they avoided major blood vessels, nerves, and organs, they were able to keep the operations within safe parameters. Both surgeries were considered successful.

After coming to Taiwan, Baringin, a devoted Christian, prayed constantly. He prayed throughout the night before the first surgery. And when he saw his son being pushed into the operating room the next morning, tears rolled down his face. When he returned to the ward, he started crying again.

Baringin was so worried that he couldn't eat or drink, no matter how the volunteers cajoled him. One volunteer, Yen Hui-mei, gave him some red-bean cakes, saying, "Red-bean cakes symbolize good fortune. If you eat them, your son will be fine throughout the surgery." After much encouragement, Baringin finally ate two cakes.

Tzu Chi Collegiate Youth Association members who understood the Indonesian language stayed with Baringin throughout the first surgery, and other volunteers also came to encourage him from time to time. Baringin smiled as the volunteers expressed their kindness and encouragement, but he was still worried. When he learned that the surgery had gone well in the afternoon, he was completely relieved. He immediately phoned his wife with the good news after seeing Noventhree recovering peacefully in the intensive care unit.

After the second surgery was over, Noventhree saw his son being pushed out from the operating room. He saw that the tumors had been greatly reduced and that his son had a little chin. Again he wept speechlessly for a while.

Baringin said, "I was quite aware that these two operations involved many challenges. When I saw how devoted everyone was, I was touched and felt very happy. I have more confidence in facing my son's future operations now."

Springtime in the ward

Baringin loves to draw, so Chief Nurse Lu Chi-yen of the pediatrics department gave him a drawing book. He likes to draw geese, because the birds always form a flock and have a sense of teamwork. Also, the large geese always look after the little ones. This seemed to represent his affection to his son!

Noventhree loves to get bathed by nurses and enjoys bubble baths. He also likes to take the elevator to other places to walk around, and he especially likes to watch TV! Whenever he sees animals on screen, he imitates their calls. Even though his throat is recovering from the tracheotomy, he can still hear the calls he attempts to make.

Volunteer Chang Chi-hsueh, who accompanied Baringin and Noventhree at the hospital, remarked that Noventhree uses various expressions to indicate his feelings. For instance, when he bends his eyebrows, he is thinking; when he knits his eyebrows and his body twitches lightly, he is crying. When his body becomes stiff and he kicks his feet, he is angry; when he moves his body from side to side and his mouth opens slightly, he is laughing. When he watches TV, he has many expressions as well. He crosses his legs to show he is happy. When he sleeps, he always hugs the Pink Panther stuffed animal that the Master gave him.

After two operations, Noventhree's face already looks better. The left side of his face has been shaped to a nice-looking curve, and his chin has been greatly reduced and looks rather adorable. His lower lip also has a nice curve. There are now only the tumors on the right side of his upper jaw and between the upper lip and nose, which will both be removed in the third operation.

Baringin knows that there is still a long way to go for his son to get a completely new face, but he will wait patiently. He also believes that the Tzu Chi medical team will do their best to help his family make their dream come true. No matter how long the wait, he will forever stay by his son.