When Roona was born, the people of Jiraniakhola village in Tripura thought she was an alien, with her misshapen head almost twice as large as her body.
"We couldn't even carry her because her head was so big," says her mother, Fathema Khatun. Roona, the daughter of an illiterate manual labourer and a homemaker, was born with hydrocephalus - a medical condition in which abnormal amounts of cerebrospinal fluid (CSF) collect within the skull, causing progressive enlargement of the head.
In April 2013, a photograph of the infant, then 18 months old, taken by Agartala-based photographer Arindam Dey, was released by the news agency he works for. It was then published by several newspapers and websites, eventually being picked up by foreign publications too.
The image got CurleyStreet Media, a documentary film production house, interested in her story. Through a crowd-funding project online in July 2013, CurleyStreet raised about Rs 20 lakh in 45 days, for a documentary on Roona and her parents' struggle to find affordable treatment. They called the film Rooting for Roona.
Through the campaign, they were also met with requests from people who wanted to donate towards Roona's treatment. A year on, the sustained response to the film and the issues it sought to address have prompted the makers to reexamine and redefine their brief.
Roona is now three years old. Her sixth surgery was completed last month, at a super-specialty hospital in Gurgaon that responded to the media attention with an offer of discounted treatment.
She has returned home with a head that is almost a normal size. Doctors have declared that she can lead a functional life. Unlike before, she shows signs of cognition, smiles, responds to external stimuli and even nods her head from side to side as her parents play music for her, says Pavitra Chalam, founder of Bangalore-based CurleyStreet Media and director of the film.
Roona Begum was born with hydrocephalus, a condition in which fluid collects in the skull, causing an enlarged and deformed head
"We set out to document a story of hope, and now we are following Roona as she walks the road to recovery," says Chalam.
"But across the country, millions of children and parents continue to battle birth defects with no credible support from the healthcare system. This is the story we now want to tell. So we are expanding the scope of our film to focus on stories from Delhi, Karnataka, Tamil Nadu, Kerala and Tripura, of children who have not been able to find affordable treatment or care. Our aim is to create a film that not only does justice to Roona's story but also creates awareness about birth defects and how they can be prevented, mitigated and addressed."
When Roona was born, for instance, her parents were told to take her to the nearest metropolis, Kolkata, for treatment. Her father, who earns Rs 150 a day, could barely afford the journey, let alone the treatment, so he just took her home instead. Even today, her doctors say Roona's chances of normal cerebral development would have been better if surgical care had been available to her at birth.
Nonetheless, she will be a beacon of hope in the film, a reminder that there is a chance for a better life for the lakhs of babies born with congenital heart or liver disease, spina bifida, club foot and cleft lip each year.
"We want to travel to Kerala because it is the model state for child and prenatal healthcare delivery in this country. We are keen to find out more about the existing mechanism and how it can be emulated in other parts of the country," says Chalam.
"We shot in Tamil Nadu and Karnataka to highlight the work of health workers in remote tribal villages inaccessible by road."
Last month, the team travelled through rural Tripura, recording the struggles of affected families, talking to activists and government officials in the state.
"We came across the heart-wrenching story of a boy named Sajal Sarkar, who like Roona was born with a very severe case of hydrocephalus. His case briefly made news because it came to light around the same time that Roona's story was grabbing headlines. A large private hospital in Delhi initially offered to take care of Sajal's surgical needs, but later withdrew.
Sajal passed away eight months later, in the winter of 2013," says Chalam.
"His fate is testimony to the fact that Roona's case is not just a beacon of hope in terms of the milestones she has reached, but also an indicator of the changes we need to push for so that hope comes to every family."
The film is slated for release next year. To contribute to the making of the documentary or Roona's ongoing treatment, log on to rootingforroona.org.