NEW DELHI - Indian doctors on Friday began draining excess fluid from the head of a baby suffering from a rare disorder that caused her skull to swell to nearly double its size, a neurosurgeon told AFP.
Roona Begum, who was born with hydrocephalus, a condition that results in a build-up of cerebrospinal fluid on the brain, was found earlier this month living with her parents who are too poor to pay for life-saving treatment.
Publication of pictures taken by an AFP photographer in remote Tripura state in northeast India last week prompted a top hospital near New Delhi to offer to examine the child and led well-wishers abroad to set up an online fund for her.
Fifteen-month-old Roona's condition has resulted in her head swelling to a circumference of 94 centimetres (37 inches), putting pressure on her brain and making it impossible for her to sit upright or crawl.
Her doctor, Sandeep Vaishya, who heads the neurosurgery unit at the flagship hospital run by the private Fortis Healthcare group near New Delhi, said he had begun draining out the fluid. "We began the process today of draining the fluid out of her head externally. It is going to be a slow process and will take us at least ten days, maybe longer," said Vaishya.
The most common treatment involves the surgical insertion of a shunt, which drains the fluid out of the brain and towards another part of the body where it can be absorbed easily into the bloodstream. In Roona's case, however, the huge size of her head relative to the rest of her body complicates matters, according to Vaishya.
"Her weight is just over 14 kilograms (30 pounds). We estimate that more than half of that must be the weight of the fluid in her head, since she is very small," Vaishya said.
"There is no way her body can absorb all this fluid," he said.
Furthermore, Roona has developed a skin condition on the base of her head, leading her doctors to worry that a shunt could pierce through her scalp and leak fluid through the skin, causing new complications. "When we pierced her skin to put in the catheter today to drain out the fluid, her scalp was like paper - so thin," Vaishya said.
"There is no way she can take the pressure of a shunt at the moment so we are going to have to wait a while before we can consider surgery," he added.
How to donate
How to donate
Local doctors had told Roona's parents to take the child to a private hospital in a big city but the costs were too high for her 18-year-old father, Abdul Rahman, an illiterate labourer who earns 150 rupees (S$3.40) a day.
Although the cost differs from case to case, a complex surgery like this one is estimated to cost about 125,000 rupees (S$2,868) and require a three-day hospital stay.
Her father, who lives in a mud hut with his family in the village of Jirania Khola, had been praying for "a miracle" that would save his only child.
"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.
And a miracle came when a top private Indian hospital offered to examine Roona - raising hope that she will get the life-saving surgery she urgently requires.
The US government's National Institute of Neurological Disorders and Stroke estimates about one in every 500 children suffers from hydrocephalus.
Cases like Roona's, where the head has doubled in size in a relatively short span of time, are extremely rare, according to Vaishya.
She has outlived an initial prognosis by doctors that she would survive only two months.
Vaishya said that surgeries to treat hydrocephalus cases are "not particularly risky."
"The child must be in a lot of pain because her head is so heavy. Still, in the images I could see that she was smiling sometimes, which makes me think that her cognitive functions might still be intact," Dr Vaishya said.
The website for donations to Roona can be viewed at www.mygoodact.com/collectiondetailperson.php?id=212. It has already raised more than US$34,000.