Novemthree – Extraordinary Children

Channel Five continue their Extraordinary People series with “The Boy with a Tumour for a Face”, the story of a five year old, Indonesian, boy who suffers from the very rare condition gigantiform cementoma.

Novemthree Siahaan is a young boy from the Indonesian Batam Island. He developed what has been called a colossal tumour on his face which began before the age of two. Gigantiform Cementoma is believed to be caused by the abnormal growth of a tooth or teeth.

Local doctors had neither the skill nor the facilities to treat the boy, and coming from a poor family it seemed unlikely that they could seek outside help. The boy was shunned by the villagers who were totally unfamiliar with the condition. There are only 10 recorded instances of this disease in the World.

Gigantiform Cementoma
Novemthree Siahaan

Novemthree’s saviour arrived in the form of Dr. David Lui, a Buddhist missionary from the Tzu Chi Foundation. Dr Lui agreed to send Novemthree to Haulien in Taiwan to see specialist who could attempt the extremely complicated process of removing the tumour. The Tzu Chi Foundation would fund this treatment and agreed to fund his ongoing treatment in the future.

The treatment was carried out by a team of specialists headed by Dr. Cheng over a fifteen week period. The tumour was so large that it had compressed his eyes and had grown through the lower jaw to the point that the mandible had been destroyed. This meant that the surgeons could not fully remove the tumour. They would need to leave part of the tumour and reshape it to form the missing lower jaw.

Before surgery could commence Dr Cheng was required to perform a tracheostomy
to permit the child to breathe as the tumour had all but blocked his wind-pipe.

Dr. Cheng
Novemthree in Surgery

The tumour was tackled in three stages with several weeks in between to allow Novemthree to recover. The removal of this type of tumour can result in huge blood loss and the boy required, at one stage, a full body transfusion to keep him alive. After the second removal phase, the child was so weakened he developed pneumonia, which fortunately responded well to antibiotics.

Following the successful removal of the last of the tumour and reshaping of the jaw, Novemthree was left with a gaping hole for a mouth as the tumour had so distorted and stretched the skin of the face. Plastic surgery was still required to reduce the size of the mouth to something nearer normal.

The procedure was immensely successful and Novemthree has responded wonderfully. The child is still disfigured and will remain so until adulthood when bone grafts can be done to rebuild his face fully.

UPDATE: 22 Oct 2005

It is with great sadness that I must report the death of Novemthree Siahaan. He passed away on 14th Sep 2005 after the tumour had started to regrow and surgeons decided further operations were too risky. He developed a respiratory problem from which he didn’t recover.

Read the follow-up article: In Memory of Novemthree

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