Unless you have read the synopsis, you’d begin watching Rooting for Roona with a certain ease. Here is a mother in rural Tripura, combing her long hair and talking about her baby girl Roona whom we don’t see in the beginning. Fatima – the mother – looks very comfortable in front of the camera, least conscious of the crew in her little home. When the screen becomes an image from 2013, you realise why. This little team making a documentary on Roona has been with the family all these years. They met Roona on the same day she was first taken from Tripura to a Delhi hospital, with the tiniest hope of survival. Roona had hydrocephalus, a birth defect that caused her head to swell up to an unusually large size.
The film was just screened at the 12th International Documentary and Short Film Festival of Kerala in Thiruvananthapuram and directors Pavitra Chalam and Akshay Shankar received a lot of appreciation for their work. They shot the film for over five years, spending time with the family as they fought for Roona. And they fell in love with the little girl they came to tell the story of.
“The bond was instant. At the hospital, where we met her, no one spoke Bengali; only our assistant director Ananya Roy did and they could vent out to her. The family had felt alienated there, coming out of their village for the first time and being in a glass building in Delhi. It also helped that Roona took an instant liking to us,” says Akshay. He had joined his co-director Pavitra Chalam’s production House Curley Street seven years ago as an intern. He is now the CEO.
The film team with Roona
“We had just completed our first feature documentary on Down’s Syndrome, called Indelible, when I opened the computer one day and saw that a journalist friend had broken the story of Roona. The same day Roona was on her first flight to Delhi, and we went to meet her,” Pavitra says.
It is easy to fall in love with Roona. One can imagine the pain she must have gone through, multiple surgeries performed on her little body as a baby, but she smiles a lot. Doctors suggest that she could have been saved had there been a surgery conducted at the time of her birth. But the filmmakers realised that there is no hospital in Tripura equipped to treat such birth defects.
When Roona’s story came in the newspapers, she got a lot of attention and many offers of help. Her parents took her to Delhi where you see the doctors say multiple surgeries might heal the baby. “We didn’t know that Roona was going to live for even a day more. But six years later, we had followed her story through an ending that we had not expected. We had become more hopeful but then she passed away,” Pavitra says and you can imagine the grief the team would have had.
Pavitra with Roona
They are filmmakers who focus on work that deals with children with complex needs. They cannot afford to get attached to the children they tell the stories of, like how doctors need to put a certain distance with the patients they treat. “Every film that we choose in the social justice space is like falling in love. It becomes way beyond a subject or a story. It becomes our life, we put everything into it. When we began the film, it was a war – a hidden one -- that we wanted to wage and bring into the conversation but it soon became a love story with Roona. We still want to bring it into conversations and dialogues,” Pavitra says.
She calls it hidden because of the kind of reluctance that people appear to have in talking about children with birth defects. “It is somehow not considered a polite conversation even though there might be someone in the family (with birth defect). Roona’s was the first case we saw appear on the front page of a newspaper. So at least people had begun to talk about it.”
The media attention got two Norwegian students to raise money for Roona’s treatment through crowdfunding. Pavitra names a generous friend of hers – Hema Hattangady – who helped with funding the film crew’s immediate needs to make the film. The executive producer, Vanita Boswell, has also been of great help.
You could watch in the documentary the cameras clicking away furiously as Fatima steps out of the car with Roona, coming back to Tripura from Delhi. But the media attention went away a few days later like it happens in every breaking story. Only Pavitra, Akshay and their team stayed back, and kept revisiting the family every few months. There came a point when Roona needed just one more surgery to get better but this had to be done within a month and a half. That was the time her parents had one more child and Fatima, who seemed resolved in the beginning, was suddenly weighed down, tired from childbirth and looking after Roona, who could not move from the bed on her own.
“They had their reasons (for not being able to get the final surgery done). They were super young when Roona was born – the father (Abdul) was 17, the mother 25. The father had to work to make sure there was food on the table and the mother was looking after Roona day and night,” Akshay says.
The crew who had by then got so close to the child, tried to convince the family of the need to do the surgery soon. “We presented the situation but the decision had to be theirs, and whatever that be, we’d respect it,” Pavitra says.
In 39 minutes – the documentary duration – you, as a viewer, would have been moved enough by the smiles that Roona gave freely away that you wish every second the family would have somehow taken her for that final surgery. You hope, with the filmmakers, that she’d walk, go to school, grow up like any other child.
“The worst thing you can ever feel as a human being is helpless. We endure a lot of grief and anxiety working on a film like this. Here was a chance for a child to live, and every passing day, we could be losing that chance. But the decision had to be her parents’ and we had to tell ourselves, let’s wait,” Pavitra says.
“It changed us. In the films we have done in the past, there would be more control, we’d know how our characters are. But with Roona, we didn’t. It taught us to be patient,” Akshay says.
A few months after Roona’s death in 2017, Pavitra became pregnant. Through the entire editing process, she was looking at a film about a birth defect. The film was completed and sent to the Women in Film Fund Grant (which they won) six months after her son was born. Fatima was sure it’d be a girl for Pavitra. The family is still in touch with the filmmakers, holding onto the memories of Roona, while raising her little brother Akthar.