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Written By: Admin | Updated : April 15, 2013 9:00 AM IST
Abdul Rahman is a desperate man. The 18-year-old s daughter, Roona who is just one-and-a-half year s old is suffering from a rare condition which has caused her head to swell up to an enormous size due to a condition called hydrocephalus. It s caused due to a build-up of cerebrospinal fluid in her brain. The potentially fatal illness has caused Roona s head to swell up to a circumference of 91cm or 36 inches and is also putting pressure on her brain.
Day by day, I saw her head growing too big after she was born, said the illiterate labourer who works in a brick-making factory in Tripura state. Docs told him to take his daughter to a big city hospital in Kolkata but that s not feasible because Rahman earns a meagre Rs 150 per day as daily wage labourer in the brick plant.
It's very difficult to watch her in pain. I pray several times a day for a miracle -- for something to make my child better, he said. The US government's National Institute of Neurological Disorders and Stroke estimates about one in every 500 children suffers from hydrocephalus.
The most common treatment is to insert a surgical shunt system which can drain the cerebrospinal fluid away from the brain and towards another part of the body where it can be absorbed into the bloodstream. Cases like Roona's, where the head has doubled in size in a relatively short span of time, are extremely rare, according to leading Indian neurosurgeon Sandeep Vaishya.
It's difficult to assess the situation without seeing the patient, but a surgery, even at this late stage, would give her brain the best chance it has to grow and develop normally, Vaishya told AFP.
Vaishya, who is the head of neurosurgery at the privately run Fortis flagship hospital in Gurgaon, a satellite city of the national capital Delhi, said that surgeries to treat hydrocephalus cases are not particularly risky .
Although the cost differs from case to case, he estimated that a complex surgery like this one would cost about 125,000 rupees ($2,300) and require a three-day hospital stay. Roona now is confined to her bed and unable to move her head but she is a playful child, quick to smile and giggle and is able to move her limbs, according to her father.
She has outlived an initial prognosis by doctors that she would survive only two months. But her mother, Fatema Khatun, 25, says the little girl's health is getting worse and that she urgently needs help. She is deteriorating. She eats less and less, vomits often and I can see that she is getting thinner, Khatun told AFP.
