AFP Photo/Roberto Schmidt
By Ammu Kannampilly
The MRI scanner beeped and buzzed for forty-five minutes as 15-month-old Roona Begum lay inside, getting her brain examined. A rare and potentially fatal illness had caused her head to swell to nearly twice its normal size, some 94 centimeters in circumference.
By the time doctors returned she had drifted off to sleep, tired after a long journey to New Delhi from the village of Jirania Khola in India's remote northeast. The night before, I met Roona's 18-year-old father Abdul Rahman for the first time, barely an hour after he arrived in the capital.
He told me he always wanted to ride in an airplane, but when the moment finally arrived he was too nervous to enjoy it. Their baby daughter lying across their laps, Rahman and his 25-year-old wife Fatema Khatun sat quietly as curious passengers gawked. The couple was used to stares, but everything else around them was unfamiliar: the packaged food, the cutlery, the roar of the engines as the plane took off.
Twenty-four hours earlier, India's Fortis Healthcare group had offered to fly the family from their home in Tripura state to its flagship facility near New Delhi so that Roona could receive life-saving surgery.
From the beginning, Rahman had prayed constantly for a "miracle" to save his little girl. "The day she was born, the doctor said there were no guarantees she would survive," he told me. Roona spent her first week inside an incubator.
She was diagnosed with hydrocephalus, an illness which causes cerebrospinal fluid to build up on the brain. The condition afflicts up to one in every 500 children, according to studies cited by the US National Institute of Neurological Disorders and Strokes.
The most common treatment involves the surgical insertion of a shunt to drain fluid away from the brain and towards another part of the body, where it can be absorbed into the bloodstream. Local doctors told Rahman to take his daughter to a better-equipped facility in a bigger city.
They didn't tell him how much it would cost, but he knew without asking that it would be too much, far more than an illiterate laborer earning 150 rupees a day – less than three US dollars – could afford.
He took her home.
AFP Photo/Roberto Schmidt
= the power of a picture =
Roona was a placid baby, easy to please, quick to smile. Then her head began to grow. The rest of her body -- spindly limbs and a tiny abdomen -- simply couldn't keep up. "Anything we feed her, it's as though it goes straight to her head, nowhere else," Rahman said.
Soon, the consequences of her illness emerged. Roona couldn't crawl, sit up or roll over. "It was frightening. Her head was getting so big, we didn't know how to pick her up without hurting her," he said. Her parents learned to carry her in turns, and to soothe her by nuzzling her cheek or rubbing her stomach gently.
Before I saw Roona the night she arrived in Delhi, I assumed that the size of her head would shock me. It didn't, or at least not nearly as much as her skinny little body.
I soon understood why she appeared so malnourished. She had teeth but she couldn't chew. She could barely tolerate opening her mouth. It hurt too much. As Roona cried softly, her mother struggled to feed her little morsels of crushed biscuits dipped in water.
AFP Photo/Roberto Schmidt
Despite Roona’s affliction and their more-than-modest means, her parents managed to keep their small family going, bolstered by Rahman's faith that the "miracle" his child needed would come. "I didn't think of her as a sick child. I always thought she was really strong to endure so much pain," he said. "I figured we would do our best for as long as we could and Allah would help us with the rest."
It was a humid day in April when photographer Arindam Dey appeared outside their mud hut. Khatun was alone with the baby.
The publication of Roona's photographs by AFP provoked many well-wishers to contact the agency and offer donations. Two Oslo-based college students, Nathalie Krantz and Jonas Borchgrevink saw the pictures and launched an online appeal which was to raise $52,000.
Leading Indian neurosurgeon Sandeep Vaishya, the head of neurosurgery at Fortis hospital, told me he was willing to examine Roona to see if surgery would be possible, and arranged for her to come to New Delhi. In her first 24 hours at the hospital just outside the capital, Roona was seen by a pediatric neurologist, cardiologist, psychologist, dermatologist, nutritionist and a neurosurgeon.
AFP Photo/Arindam Dey
She struggled to breathe. Her limbs were stiff due to too little use. The skin on the base of her head was infected and encrusted with scabs due to poor blood flow. She was severely malnourished. And she saw very little because her expanding head had forced her eyes to recess deep into their sockets.
= Preparing for surgery =
The MRI results gave Sandeep Vaishya a measure of hope. "I don't see a tumor. The spine looks ok. The brain seems to be functioning normally," he told me.
A second-generation neurosurgeon, Vaishya had never seen a hydrocephalus case as advanced as Roona's. Most babies with untreated hydrocephalus die early as their heads expand. Roona's case was rare and her chances of survival uncertain. Simply put, her head contained too much fluid for a standard shunt surgery to be successful. "Her weight is just over 14 kilograms. We estimate that more than half of that must be the weight of the fluid in her head," Vaishya said. "There is no way her body can absorb all this fluid."
Another solution would have to be found.
Three days after Roona was admitted, doctors pierced her scalp and began to drain fluid from her head into an external bag. It was a slow process, and a very long wait for her parents.
AFP Photo/Sajjad Hussain
"When she was born, she was very alert. She used to reach for my hand and grab it but in recent months she has stopped," Rahman said. "The uncertainty is the thing that bothers me most – whether she will ever get better, what her life will be like."
Nearly two weeks after doctors began the draining process, the circumference of Roona's head had dropped from 94 to 69 centimeters. With three liters of fluid drained, her skull now resembled a half-deflated football.
Her pupils were visible, her cries had grown louder, her hair appeared thicker, her mouth now opened without a whimper. As Rahman tried to wipe drool from her lips Roona grabbed one of his fingers and held on to it, her tiny hand curled around it like a claw.
It was almost time for surgery.
When the day came, Rahman and Khatun were too nervous to linger outside the operating theatre. AFP was given permission to film the surgery, during which doctors would use a surgical drill to pierce the skull before draining fluid to Roona’s abdomen.
AFP Photo/Roberto Schmidt
Vaishya made a series of swift incisions along the right side of her head and stomach and then used a drill to pierce her skull before inserting a shunt, catheter and valve. The shunt system would drain the fluid out of her head and towards her abdomen where it could be absorbed into the bloodstream. The operation lasted more than an hour.
It was a "perfect" surgery, a smiling Vaishya told me immediately afterward. Still, he admitted, it was "too early to say what the quality of her future life will be like." She would need "extensive physiotherapy" and plenty of nutrition, he added. "Her body will have to grow strong so she can learn to sit up and move about and live a normal life."
Roona soon regained consciousness. The sight of her bruised and bandaged head was too much for her mother, who sobbed inconsolably until Vaishya reassured her that the operation was a success. Khatun said little but privately struggled to understand. How could it be a success when her child's still too-large head was covered with scabs and gauze strips?
In fact, Roona will need further surgery soon. "We will remodel her skull, move the bones and fix them with plates to reduce her head size so she can grow normally," Vaishya said. After the surgeon left the room, Rahman told me he felt "hugely relieved" and wanted to "thank the doctors, the well-wishers, everyone who has been on this journey with my family".
The size of Roona’s head still worried him, but he felt like the end was in sight. “The day her head looks normal, then I will feel like I can relax a little, I will know then that we have won our fight."