Roona Begum is enjoying a new lease of life after her swollen head was reduced from 37 to 23 inches during life-changing treatment.
Indian-born Roona, 3, suffers with the illness hydrocephalus, which affects up to 500,000 children worldwide.
The condition stems from a blockage in the valve that drains cerebral spinal fluid to the spine – squashing the brain, restricting its development and stunting its growth.
At three-years-old Roona’s head reached 37 inches in diameter – more than triple the average size for her age.
Roona Begum is enjoying a new lease of life after her swollen head was reduced from 37 to 23 inches during life-changing treatment (pictured left, before treatment, and right, after undergoing surgery)
Her parents, Fatima Khatun and Abdul Rahman, were unaware of the severity of her condition for a long time because they could not afford routine medical care.
Abdul said: ‘This all feels like a bad dream. We did notice her head getting bigger and bigger, people in our village would come see our baby.
‘Children would come to our village to play with her and there were some children who would get scared looking at her head.’
Following an MRI, doctors warned Roona’s parents that she could die if the fluid from her brain was not drained as soon as possible.
Fatima said: ‘We were worried about the baby and how to provide her with better medical care as we were helpless with our financial condition.’
Roona’s neurosurgeon Dr Sandeep Vaishya, was the first to asses her at Fortis Memorial Hospital in New Delhi.
He said: ‘I thought it would just be a routine hydrocephalus. When I saw her for the first time my first reaction was ‘oh my god’ – it is stupendously big.’
Roona’s family, who lived in a single room hut with no running water or electricity in India’s remote Tripura state, could not afford treatment on their own – but several charities intervened and raised the money for her surgery.
Baby Roona and father Abdul Rahman. Following an MRI, doctors warned Roona’s parents that she could die if the fluid from her brain was not drained as soon as possible
Sadly Fatima and Abdul’s unwavering love for Roona was not always matched by those around them.
Abdul said: ‘A lot of people said a lot of things in our village, some thought she was a deity and some suggested that we should giver her away to an orphanage or an ashram, but we refused.
‘We said if she lives she will stay with us. Otherwise she will go back to him who made her like this.’
In her first surgery, Dr Sandeep Vaishya drained fluid from her brain and applied a pressure bandage to reduce the circumference of head and remodel the bones.
The operation was the first of many for little Roona and the surgeons drained nearly eight pints of fluid from her skull over three weeks.
Neurosurgeons then inserted a shunt to redirect the fluid to her stomach and remodelled her skull to fit it to her new head size.
Dr Sandeep Vaishya said: ‘Surgery itself is a major challenge in such small babies because when we remodel the skulls we have to open the whole scalp and a lot of bone cuts are done.
Roona’s family, who lived in a single room hut, could not afford treatment on their own – but several charities intervened and raised the money for her surgery
‘And actually in the last remodelling surgery her blood pressure dipped so much that we had at one point in time thought we might even lose her.’
But Roona surprised everyone and now six months later, she is out of the danger zone and recovering well.
Her head remains larger than average, but the diameter of her head has been reduced to 23 inches – there will be no further reduction in size.
Fatima and Abdul have even welcomed a healthy little boy to the family and are hopeful that Roona will one day learn to walk and talk on her own.
Roona’s mother said: ‘The doctors said she would not live, but she has lived to see more than two and a half years. For that I’m happy. She is much better now.
‘She can hold her head straight and she can move her head from side to side on her own. I would be very happy if she could become a normal child and could stand like normal kids.’
Abdul is just as happy with Roona’s miraculous journey and is thankful for the flood of support they received from around the world.
Roona’s neurosurgeon Dr Sandeep Vaishya, was the first to asses her at Fortis Memorial Hospital in New Delhi
He said: ‘Roona’s case is known to the world. They are discussing it and other cases are also getting attention because of Roona.
‘All of those who have supported Roona in the treatment and all those who were around during the tough phase – I want to thank every one of them.’
Little Roona is just one of four children whose journeys to recovery are explored in the upcoming TLC show My Baby’s Head Won’t Stop Growing.
Parker Hendrix was diagnosed with hydrocephalus in utero and at the time her brain was so crushed by fluid pressure, it was hardly visible on scans.
Now seven, she has undergone three shunt replacements and has just started first grade.
In Uganda, Tumuewabze sought treatment for her baby Lyndos Tumuramye at CURE children’s hospital Talent, who are pioneering new corrective surgeries to treat hydrocephalus.
Another patient at CURE hospital, ten-year-old Vincent Kintu, underwent life saving surgery by Justin Onen to reduce the swelling on his brain – a tough operation made more complex by his age.