Novemthree – Extraordinary Children
Channel Five follows up their Extraordinary People programme “The Boy with a Tumour for a Face”, with a touching look at how Novemthree managed after his ordeal in the operating theatre.
Novemthree Siahaan, or Noventri, as appears to be the local version of his name, was born with a rare genetic disorder call Gigantiform Cementoma. This causes the tissue of the teeth to grow, uncontrollably, into huge facial tumours.
This young boy underwent four major surgeries to remove almost a kilogram of tumour from his face. Surgeons had to completely rebuild his jaw. Miraculously he survived and was, eventually, able to lead something resembling a normal life.
It was hoped that minor operations every 2/3 years would keep the tumours under control. But, the sudden deterioration, just one year later, has thrown this schedule into disarray.
The final reconstruction would have to wait until bones in other parts of Novemthree’s body had grown sufficiently for grafts to be taken to form a new bone structure for his face.
At the start, Novemthree and his family, mother Mindo, father Siahaan and brother Saut, were shunned by the local villagers, but a year on and this has changed. Novemthree has made friends and the villagers are more accepting. He is able to lead something resembling a normal life.
However, all is not well, it has become obvious to the volunteers from the Tzu Chi Foundation that the tumours are still growing. So on July 5th 2005 Novemthree is returned to the Tz’u Chi Buddhist General Hospital in Hualien, Taiwan for further tests. A CT Scan reveals that the tumours are regrowing in every section of his face, and are more aggressive than anyone imagined. He will require immediate surgery to clear his airway and relieve the pressure building on his eyeball. It has become apparent that performing the operation will be dangerous and will also mean a lifetime in and out of the operating theatre for the boy.
To consent to his treatment, Mindo and Siahaan will commit Novemthree to a life of continual and painful treatment, far away from home. Repeat surgery is difficult and the planned operation will be the most dangerous he has so far undergone.
Dr. Shuyr has a last minute concern, and decides that the only way the operation can proceed is to perform a permanent tracheotomy. This scares Mindo and throws the surgical team into a quandary. Caring for a permanent tracheotomy once back home will be very difficult, and at the last moment, the operation is cancelled.
Mindo and Novemthree return home to Batam in Indonesia where doctors hope Mindo and Siahaan will have time to come to terms with the tracheotomy. Sadly, two months later, Novemthree died, quietly, in his sleep, not quite seven years old.
Siahaan describes his son: “Novemthree was a kind, wise and clever kid. Whenever he was feeling ill he never once complained to us, he simply took all his suffering on his own.”