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HindustanTimes Sat,30 Aug 2014

Roona gets second life: surgery on baby with swollen head successful

AFP  New Delhi, May 15, 2013
First Published: 14:17 IST(15/5/2013) | Last Updated: 22:09 IST(15/5/2013)

Doctors on Wednesday successfully carried out life-saving surgery on a baby suffering from a rare disorder that caused her head to swell to nearly double its size, her neurosurgeon told AFP.

"The surgery went perfectly, much better than expected," Sandeep Vaishya said after the procedure on 15-month-old Roona Begum, speaking exclusively to an AFP reporter inside the operating theatre at a hospital in Delhi.

"It's definitely a success but it's too early to say what the quality of her future life will be like," said Vaishya.

Roona, who was born with hydrocephalus, a condition that results in a build-up of cerebrospinal fluid on the brain, was found in a village in Tripura last month living with her parents who are too poor to pay for treatment.

Publication of pictures taken by an AFP photographer in Tripura prompted the hospital, run by the private Fortis Healthcare group on the outskirts of Delhi, to offer to treat Roona for free.

When Roona was born, local doctors told her parents to take her 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 Rs. 150 a day. Roona's condition had caused her head to swell to a circumference of 94 cm (37 inches), putting pressure on her brain and making it impossible for her to sit upright or crawl.

Vaishya estimated the weight of the fluid in her head amounted to half her total weight, leading him to believe that her body would struggle to absorb all that liquid in the event of a procedure known as a shunt, where a tube is inserted into the head.

Fatima Khatun kisses the head of her eighteen month old daughter, Roona Begum, suffering from Hydrocephalus--a buildup of fluid inside the skull that leads to brain swelling--at their hut in the village of Jirania on the outskirts of Agartala. AFP PHOTO/ ARINDAM DEY/ FILES

 

Furthermore, Roona had developed a skin infection on the base of her head, leading doctors to worry a shunt could pierce through her scalp and leak fluid through the skin, causing new complications. Vaishya decided to drain the fluid from her head into an external plastic bag and continued the process until the circumference had shrunk to about 60 centimetres, allowing him to perform the surgery.

AFP was given access to film the surgery, which lasted over an hour and involved the insertion of a shunt to drain the fluid out of her head and towards her abdomen where it could be absorbed easily into the blood stream. It is the most common treatment for hydrocephalus, a condition that affects about one in every 500 children, according to the US government's National Institute of Neurological Disorders and Stroke.

Vaishya, who heads the hospital's neurosurgery unit, said Roona would still need "extensive physiotherapy" to allow her to lead a fully functional life.
"Her neck muscles are very under-developed, so she will need more nutrition and extensive physiotherapy to make her stronger. Her body will have to grow strong so she can learn to sit up and move about and live a normal life."

In an interview after his daughter was admitted to the hospital, Rahman said he had prayed constantly for a "miracle" to save his little girl.
"The day she was born, then itself the doctor said there were no guarantees she would survive," he told AFP. "I figured we would do our best for as long as we could and Allah would help us with the rest."

The pictures of Roona prompted an outpouring of support around the world with prospective donors contacting AFP and other news organisations, enquiring how they could contribute to a fund for her and her family's welfare.

Two Norwegian college students, Jonas Borchgrevink and Nathalie Krantz, saw Roona's photographs and started an online campaign that raised $52,000 to help her family and fund any future aftercare treatment. The students told AFP they have already established contact with a local media website in Tripura that will help send the money to the family.

( The website for donations can be viewed at www.mygoodact.com)


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