Season 4, Episode 9 RunTime: 47:39 Extraordinary People presents an update on the Indonesian boy named Novemthree, who underwent radical surgery in Taiwan to remove a huge, facial tumor. One year later, his tumors have grown and now his life is once again in danger from suffocation and starvation.
This astonishing film follows up on the case of Novemthree, the boy whose face was almost completely obscured by colossal tumours by the age of two. He is settling back into a life after groundbreaking surgery and beginning to regain both physical and emotional confidence, but a year on, the tumours are growing again. More surgery might kill him, but leaving the tumours unchecked is a fatal decision. Novemthree’s life hangs in the balance.
Back in November 2004, Five showed an inspiring documentary telling the story of five-year-old Novemthree, an Indonesian boy with a rare genetic disorder called Gigantiform Cementoma. The condition manifested itself in the largest facial tumours in recorded medical history. Doctors on the Indonesian Batam Island had neither the skill nor the facilities to treat him, and coming from a poor family it seemed unlikely that they would seek outside help. The boy was shunned by the frightened villagers who were totally unfamiliar with the condition. Help came in the form of Dr. David Lui, a Buddhist missionary who agreed to send Novemthree to a specialist unit in Taiwan. Novemthree arrived at the Buddhist Tzu Chi hospital in Hualien, Taiwan, in the spring of 2004, where he presented doctors with their greatest ever challenge. His illness had caused the tissue in his teeth to mutate into giant tumours and had destroyed most of the bones in his face. In a series of painstaking operations, most of the tumour was removed. Just enough of Novemthree’s face was left behind, which the doctors shaped into a new face and miraculously, his sight was restored. Doctors hoped that minor operations every few years would keep the tumour at bay.
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This film comes back to Novemthree’s story a year on, when sudden deterioration has thrown the long term schedule into disarray. Surgeon Dr Chen is shocked to see how much of his work has been lost. Novemthree is having difficulty breathing and eating and he must return to Hualien with his mother, Mindo.
When Novemthree and Mindo arrive at Hualien the doctors are impressed at his energy and mobility but cannot ignore the startling developments in his condition. A CT scan reveals that the tumour is re-growing at an astonishing rate in every section of his face, stunting his breathing and his vision. More major surgery is the only way to save Novemthree’s eyesight and save him from suffocation.
This is a turning point in Novemthree’s treatment. It has become clear that the tumour is more aggressive than anyone had imagined, and if Novemthree is to survive, he must resign himself to a lifetime in and out of surgery. “I feel sad and disappointed,” says Mindo, “because it means that my son will not be cured.”
It is down to Mindo and Siahaan, Novemthree’s father, to decide whether or not to let the doctors operate. To do so would mean a life of continual and painful treatment for Novemthtree, far away from home; to refuse might mean putting his life on the line. News of Novemthree’s condition reaches David Liu, the kindred spirit who discovered Novemthree in 2004; he rushes to Taiwan to be with him and Mindo. He empathises with the agonising dilemma Mindo and Siahaan face and he tries to help them with their heartbreaking choice. Finally, they decide to give the surgeons the go-ahead.
Concerns over Novemthree’s breathing during the procedure mean that a tracheotomy – a permanent breathing hole – needs to be cut into his throat. A tracheotomy would affect him for the rest of his life, as it would need to be carefully monitored, but without it the operation itself would be more risky. In the prevailing uncertainty, the operation is cancelled in the hopes that a solution can be found in the coming months.
Two months after Novemthree returns home, he passes away in the night. The doctors had given him the gift of normal life, albeit briefly: he was nearly seven. “Novemthree was a kind, wise and clever kid,” says Siahaan. “Whenever he was feeling ill, he never once complained to us. He simply took all his suffering on his own.”
NOTE:
Contains scenes of surgery some viewers may find disturbing.
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