The pictures may be difficult to look at, but 18-month-old Roona Begum’s story of survival is remarkable.
Soon after she was born in a remote village in northeastern India, Roona was diagnosed with an extreme form of hydrocephalus – a disorder causing cerebral fluid to build up in the brain. Doctors had given Roona just a few months to live.
“Day-by-day, her head started growing bigger, she stopped wanting to eat, she would just lie in bed, it became very difficult for us to carry her and take her anywhere,” says Roona’s father Abdul Rehman says.
Roona’s head grew to a circumference of 94 centimeters, almost triple the size of a normal baby. There were ten liters of excess fluid inside her brain. Her head was so heavy she could barely move.
Hydrocephalus is more common among infants and older adults. The condition is caused by overproduction, obstruction or lack of absorption of the cerebral fluid in the brain. The skin of her head has stretched so far, it pulled her eyelids over her eyes, making it impossible for Roona to see.
Her mother, Fatima Begum, would draw eyebrows on Roona with black kohl everyday just to try and make her look more normal. Her head started growing bigger, she stopped wanting to eat, she would just lie in bed, it became very difficult for us to carry her and take her anywhere.
“She had such a big head, it was scary for people to see her,” Fatima explains
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