Rooting for Roona - a story about hope and courage and the unconditional love between a mother and her child. Our dream of the world getting to know Roona like we did, as the bravest little girl whose will to live defied all odds, has finally been realised.?
I remember the day I first saw Roona¡¯s face. It was the 13th of April, 2013 and I was in the final stages of finishing up my first feature documentary Indelible which is about the lives of seven people with Down Syndrome. I was scrolling through my feed when I saw Roona. A journalist friend of mine had written the first article. My reaction was visceral. The photo broke my heart. People have asked me since then why we chose to follow Roona¡¯s story. I don¡¯t have a perfect answer but I say it felt like falling in love ¨C inexplicable and unavoidable in equal measure. Hope had found its way to the most unlikely person in the most unlikely place. We felt that if hope can reach Roona, then maybe it could reach the millions of other children like her who are born with a birth defect with no access to proper care. The next day we were on a flight to Gurgaon to meet Roona.
Roona was born in a tiny village called Jirania Khola near Agartala, Tripura. A birth defect called Hydrocephalus, which is a build-up of fluid in the brain, caused her head to swell to an unprecedented size of 94 cms by the time she was 17 months old. A photojournalist, Arindam Dey, who was shooting in the nearby brick kilns, captured the first photos of Roona that would go viral in 24 hours. It triggered an amazing chain of events.?A swell of support from around the world resulted in Fortis hospital in Gurgaon agreeing to treat Roona.
We had to fight to get through dozens of journalists and cameras to meet Roona and her parents Abdul and Fatema for the first time at the newly inaugurated Fortis Memorial Research Institute in Gurgaon. It took a minute to understand what I was looking at when I met her. Her tiny body was completely dwarfed by the size of her head. I have never seen fragility and extraordinary strength come together in the way it did in Roona. No one should have to endure this, leave alone a baby girl. Her parents Abdul (17) and Fatema (22) only spoke Bengali. They looked intimidated by the media attention but also fiercely protective of their child. All our communication was non-verbal at that point but I could tell that Fatema was sizing us all up. After all, we were strangers. Why should she trust us?
Over the course of the next 5 months, Roona underwent 5 surgeries. Her lead neurosurgeon, Dr. Sandeep Vaishya was always cautiously optimistic. I found this admirable because no one else seemed to give her a chance. During this time, a bond began to develop between Fatema and us. Our assistant director Ananya Roy could speak their dialect. Fatema began to see us as friends and confidantes. She would unabashedly express her fears, anger and hopes to us. I could see that this was a mother who would stop at nothing for her child.
In five months, Roona¡¯s head size reduced drastically from 94 cm to 58.5 cm. Her chief surgeon shared a very positive prognosis with us. The expectation was that Roona might be able to lift her head up and potentially after another surgery down the line, even walk. The day she was discharged was a memorable one. Her parents were relieved to see their child was not in pain and also to finally be going back home to everything that was familiar. We escorted the three of them on the flight and the ride back home. It was a hero¡¯s welcome. The whole village and the world¡¯s press were there. There were big smiles all around and a general feeling of goodwill and gratitude filled the air. It felt like everyone had won something.
In 2014, we met a visibly happier Roona. We spent a lot of time observing the bond between Roona and Fatema. Apart from documenting their everyday life, we investigated the local medical infrastructure to understand how Roona¡¯s condition came to be. We tracked down the doctor who delivered Roona and organised a meeting between him and Roona's family. We were also finally able to get her birth certificate issued. This was a big deal for both the family and us.?
Even though she could never talk, Roona¡¯s spirit was always loud and animated. While the doctors weren¡¯t certain if she could see, she recognised us and would break into a smile when we spoke to her. These little things were all the fuel we needed to remain motivated. Our vested interest in seeing Roona¡®s condition improve meant that we often put things in motion such as medical check ups, ensuring her progress in recovery, negotiating with the hospital for her care, and making sure all medication and vaccines were available to her.
In 2016, we received news of a pleasant surprise. Fatema had delivered a healthy baby boy named Akhtar Hussain. However, when we arrived there was palpable tension between Abdul and Fatema. The strain of now having to care for both Roona and Akhtar had taken a toll on Fatema. Our focus in this period was to urge both the parents to take Roona back to Gurgaon for the final surgery. We had been in constant contact with her doctor who had made it clear that vital time was being lost. Both Fatema and Abdul felt there was a great deal of risk in going ahead with the surgery because the doctors weren¡¯t giving them any assurances. Their fear was that they would lose Roona on the operating table. This was extremely difficult for us to accept but we were clear in our minds that the decisions had to be taken by the parents.
In February 2017, Fatema asked us to come back. Akhtar was now a feisty one year old and they felt that Roona¡¯s condition had stagnated. They were finally ready to take her for the final surgery. In May 2017, we travelled to Delhi with Fatema and Roona for a medical inspection. I didn¡¯t know what to expect. When we arrived, the doctors found out that Roona had contracted chicken pox. However, despite the huge delay, Dr. Vaishya informed us that the surgery could be done. He felt hopeful for her. Fatema was overjoyed. She was told to return in a month for the final surgery, as soon as Roona recovered from chicken pox.?
On 18th June 2017, Roona developed sudden and unexpected breathing issues and passed away at home. At 8:10 PM that night, we received the dreaded call from Abdul. The feeling of loss was devastating. It felt like a punch to the gut because we had been most hopeful for her in that one month, so close to her perhaps being able to walk. We were on the first flight to Tripura the next morning and were fortunate to be with her, her family and her entire community as the last rites were performed at sunset in Jirania. The whole crew operated in silence. In our grief we made a pact that her beautiful life would not have been lived in vain and now more than ever, we would stand strong for Roona.
?In 2018, we went back to Tripura to spend time with Abdul, Fatema and Akhtar and understand how they were adapting to life after Roona. Fatema seemed hardened. She told us that what she wanted more than anything, was for no other parent to go through what they did. She said that she still often sees Roona in her dreams and that she will never forget.
The film had its World Premiere at IDSFFK and was awarded the Audience Award for Best Short Film at the South Asian Film Festival of Orlando. It was released worldwide on October 15th, 2020 on Netflix. It is now available in 190 countries and in a wide variety of languages.
(Pavitra Chalam is an award-winning documentary filmmaker based in Bangalore. Her filmson issues of social importance have received critical acclaim across the world. She hasdirected over 200 films in the last 15 years and is the Founder of Curley Street.?She was also honored by the government of India in 2016 as one of 25 women achievers/ambassadors for social change.)