Tripura-born Roona Begum, who made headlines around the world after her head swelled up to 94 centimetres (circumference) due to hydrocephalus (water on the brain), will turn four-year-old this November. After seven surgeries at Gurgaon-based Fortis Memorial Research Institute (FMRI), which has been treating her free of cost since 2013, the child can now communicate in mono syllables with her parents.
Roona is all set to undergo her eighth surgery in August this year."This time, it will be a reconstructive surgery to further reduce her head,"said Sandeep Vaishya, Roona’s doctor and director of neurosurgery at the FMRI. After a year since Roona’s last check-up, Abdul Rahman, 23, and Fatima Khatun, 25, along with their daughter landed in the city on July 28 from Agartala, hoping for another miracle.
With things looking grey on medical lines, hopes and wishes are not enough on the personal front. Rahman, who earns less than Rs 3,000 a month, is barely able to feed his family. (Aniruddha Dhar/HT Photo)
“If the doctors assure that she will become a normal kid, we will go for the surgery," Rahman told HT soon after Roona’s admission. But the dream to see their daughter go to school is still remote for this daily wager father and homemaker mother.
According to Dr Vaishya, it will be a tough road ahead for Roona. “Our prior focus is to make her sit without any support. For that we first need to reduce the size of her head, which is 58.5 cm right now. For a four-year-old child, the size should be about 45 cm. Also, we are not sure about her vision yet,” he said.
With things looking grey on medical lines, hopes and wishes are not enough on the personal front. Rahman, who earns less than Rs 3,000 a month, is barely able to feed his family. With no help from his relatives, either emotional or financial, he does not know whom to approach even when he needs to buy some extra medicines for his child. “Despite the world media attention, not a single official from the Tripura government came forward to help us. I am concerned about her future,” lamented Rahman.Taking a look at his daughter, he says: "Even if she undergoes another surgery, I cannot stay back for too many days. I have to go back to my village Jirania (on the outskirts of Agartala) soon, because I could not make much money last month due to heavy rains there."
Roona Begum was born with hydrocephalus, a condition in which fluid collects in the skull, causing an enlarged and deformed head. (HT Photo)
Khatum wipes her tears and lifts Roona from her hospital bed. “I had met him (Rahman) during a visit to my brother-in-laws house in 2010. We fell in love and decided to tie the knot. Roona was born a year later. I thought my girl would change our little world…and change, it did. No one came forward to help us. We did not know what to do, how to take care of our child… Our neighbours would say she is an alien,” said Roona’s mother.
She hugs the three-and-a-half year old tightly and says (in a muffled voice), “I want her to live and be healthy…I want to know what my child loves to eat.” Talking to HT from Norway, Nathalie Krantz, who along with Jonas Borchgrevink had spearheaded a social campaign via website MyGoodAct abroad to raise fund for Roona in 2013, said: “We had collected $62,000 (Rs 39 lakh approximately)...(and) sent $39,000 (Rs 24 lakh approximately) to FMRI. I have been told that the rest of the fund was sent to the hospital as well… My plan was to use the rest of the fund for her education, but her surgeries were way more expensive than I first thought… That fund is closed now, but I am thinking about starting a new one.”
Dr Vaishya, however, is optimistic about her future. “Roona is doing beyond our expectations. When I first saw her two years ago, I took the case as a challenge. But I knew there was a risk of losing her as well. In fact, there was a time we thought we had lost her… But she made us believe that miracles happen in medical science,” he said, adding that “it’s not that her vision will never come.”
This is not an uncommon disorder. However, Roona’s case has been one of the rarest since children with this disorder die begore being treated. Roona probably had one of the biggest head the world over, said Dr Vaishya.
On being asked about her survival chances, the doctor said Roona needs protection from being infected. “Her parents are so poor that we can’t expect that she would live under a neat and clean atmosphere. This is a big concern. They need more help,” he said.