5-year-old baby whose head is three times the normal size dies

A five-year-old Indian girl with a rare condition which caused her head to swell to twice its normal size has died. Roona Begum, who made international headlines after images of her condition first appeared in 2013, passed away on Sunday at her home in a village in remote northeastern India.

The girl’s mother, said she developed breathing difficulties and was rushed to hospital, but died on the way. Roona had been just days away from a fresh round of surgeries in an attempt to return her head to normal size.

Fatima said: ‘She was otherwise fit and fine. But on Sunday she started having breathing problems and I rang up my husband asking him to come back home. ‘He rushed home and gave her water but before we could take her to the hospital she died.’

Roona was born with hydrocephalus, a potentially fatal condition that causes cerebrospinal fluid to build up on the brain. Her desperate parents turned to the media in 2013 in an attempt to get their daughter help, and in 2013 a New Delhi hospital agreed to treat her for free.

Over the last four years, surgeons had operated a total of eight times and managed to reduce her head circumference from 94 centimetres (37 inches) to 58 centimetres (23 inches).

The fluid build-up was putting pressure on Roona’s brain and making it impossible for her to sit upright. Despite the surgeries she was still unable to walk, eat unassisted, or speak, but her parents still held hope that further operations would eventually allow her to live a normal life and attend school.