In the Bonesetter's Waiting Room (25 page)

Once the technology was in place, all that remained for Dr Suma and her colleagues to do was to identify those who could benefit from the treatment the Project Prakash team were offering. First, they set up ophthalmic screening camps in rural areas, staffed by a team of ophthalmologists, optometrists and healthcare workers. Those selected for possible treatment – mainly those suffering from congenital cataracts and scarred corneas – would go to Dr Shroff's for a more thorough examination, for example of the optic nerve at the back of the eye using an ophthalmoscope (little can be done to repair a damaged optic nerve) and ultra-sound, and a more general assessment made to determine whether they were fit enough to undergo surgery. All being well, an operation would then be arranged.

Project member Harvendra Dhillon's job was to coordinate outreach camps and arrange transport to the hospital. He spent a lot of time travelling to villages, meeting patients and their families and at screening camps. All this took a lot of organising.

Harvendra told me of the links forged with the government of India's Sarva Shiksha Abhiyan initiative – a flagship programme launched in 2000–2001 with the aim of universalising elementary education. In 2006 there were a staggering 38.5 million children in India between the ages of seven and fourteen who were not receiving schooling. It wasn't until the Parliament of India's Right of Children to Free and Compulsory Education Act came into effect in 2010 that Sarva Shiksha Abhiyan got legal backing, with community-owned education programme rules being set out in 2011 for the state of Uttar Pradesh, in the rural areas of which much of Project Prakash's work begins. The Sarva Shiksha Abhiyan staff helped Harvendra to publicise Project Prakash's screening dates and local community leaders would encourage attendance.

Pawan had explained to me how the screenings were not restricted by age or condition – he wanted to allow parents to feel confident about turning up with their children and aimed to give assistance – whether that might be glasses, medicines or surgery – to all who needed it.

But the criteria for acceptance onto Project Prakash's fMRI scans and scientific study are stringent. Normal vision is referred to as 20/20, which is a measure of what people whose vision is unimpaired can see from a distance of twenty feet. By comparison, poor vision, determined by the use of eye charts, is something like 20/70, meaning a person twenty feet from the chart sees what a person with unimpaired vision can discern from seventy feet.

Blindness is defined by the World Health Organisation as 20/400 vision. Prakash patients' visual function will be well below this standard. They all have had cataracts in both eyes since before they were one year of age and they all have lived with an extended period of blindness lasting eight years or more.

In Daryaganj, Shakeela Bi – Shroff's outreach coordinator and parent and patient counsellor – met me in the Project Prakash data-collection room at the hospital. For the more than 400 children and the young adults who'd come to Delhi to have their surgery done over the years and their parents, Shakeela's role had been an invaluable one. Even if they had realised that free surgery was available to them in the city, most would have been defeated by the logistics of accessing it, even though the project covered travel and accommodation costs. Shakeela made sure everything ran smoothly, also keeping in touch with the families once they returned home to organise follow-ups.

Despite her best efforts, that wasn't always possible. In one case, a boy whose mother had been raising him and four siblings singlehandedly on Delhi's streets was found to have a tumour in the eye. His mother brought him in regularly for chemotherapy sessions, until one day he simply stopped coming. Dr Suma and her colleagues eventually discovered that his mother had been arrested for some trivial offence. One can only imagine her turmoil as she sat in prison, knowing her son was without care and with no way to reach him. The child died in his mother's absence. It was a horrific story to take in.

Neither Shakeela nor Harvendra had an easy job. Both had encountered parents either reluctant to allow their children to have surgery or unwilling to attend follow-up appointments. Harvendra told me about one family in Agra, the city famous as the home of the Taj Mahal. There were five children, all with cataracts. All had been operated on at the Shroff and sent home with internal sutures in their eyes. Their parents, though, did not bring them back to get the stitches removed. ‘When their eyes become red,' Harvendra told me, ‘the parents just say, well, their eyes are red!'

I couldn't understand how any parent could refuse their child a chance of sight. When I asked her about it, Shakeela responded with a smile that was half pained, half ironic. What she said reminded me of the stories I had heard in the jungles of Gadchiroli. In attempting to provide healthcare to millions of people, here too it was not simply a matter of strained resources. Even where government funding exists, counter-productive handling has the very real potential to make things worse instead of better. ‘There are some parents who are scared. Maybe they have heard of surgeries that have caused further damage, infection – they prefer not to have it done. Others have their kids in government blind schools. These schools are well funded, boarding, they provide everything. If their kids regain sight, they might lose this good education. Some schools don't want to lose their funding either, so need the pupils to keep attending.'

‘We work with nine blind schools in Rajasthan, seven in Uttar Pradesh and three in Haryana state,' Harvendra confirmed. ‘They each have between 100 to 300 students. We screen the students there to see which of them would benefit from some form of treatment. There are fourteen blind schools in Delhi. Eleven of them do not give us permission to even assess their kids.'

That morning, the Monday after Eid weekend, as the hospital became busy again after a period of uncharacteristic quiet during the festivities, Shakeela introduced me to some of the children who had come in for follow-ups or to help with Project Prakash's neuroscience studies.

As we sat together in the Project Prakash office, Junaid was the first to arrive. We chatted, first about what it was like before he had surgery eleven years ago. He waved his forearm just ahead of him – showing me that before he had been operated on he could only see lights and shadow within a radius of about thirty centimetres. Junaid had been one of Project Prakash's first patients. He was born with dense cataracts, as were his three siblings, and had spent his childhood within the four walls of his home, his parents frightened to let him out. They had made attempts to get him into schools in their home town in Uttar Pradesh, but the teachers were unwilling to accommodate him because he was blind. When he was fourteen he was identified for treatment via a screening camp, underwent cataract removal surgery at Dr Shroff's and then participated in some of Project Prakash's key early scientific studies of visual development.

Now a quiet, composed, well-educated twenty-three-year-old, he was smartly dressed and wore a stylish pair of glasses. He lived in a tiny slum dwelling with his family of six, but, despite the challenging living conditions, he had finished the equivalent of an entire primary schooling within the space of a year. We talked about how much he enjoyed learning maths and English. Studying had, of course, been a relatively recent event in his life, but he had been highly motivated to get an education at the age of nineteen, and under volunteer tutors paid for by Project Prakash his progress had been exponential.

Shakeela told me that Junaid's parents, despite fearing it may have been too late for the growing teenagers' sight to be repaired, were glad of the opportunity for his eyes to be operated on.

I asked Junaid what he thought about children whose guardians wouldn't allow surgery. ‘If someone told me their children were blind because it is god's will, I would say, “No, it's a disease and it can be repaired, so why not repair it?” That's what I would tell the parents.'

It was interesting to hear that the impact of regaining sight was not something that benefitted only the children. Pawan had also written about the case of a mother of three boys, all born with cataracts. In 2012 they all received treatment. Apart from the obvious benefit to them, Pawan noted the knock-on effect on the mother, who was no longer taunted in her village as ‘carrying a curse'.

Girls who are blind often fare worse than boys. Dr Suma had told me that blind girls are rarely even sent to blind schools. The ratio of enrolled boys to girls was 80/20. ‘You don't even want to ask what happens to those girls,' she said, the implication being that they may be entirely neglected, or even allowed to die. At best, they were being denied an education, confined to their homes as a preferable alternative to suffering abuse outside it.

One of the fortunate exceptions had been a girl I had met at the hospital on the Eid holiday two days earlier, as she was being discharged from her follow-up. A tiny, angelic-faced twelve-year-old, almost the same age as my daughter, Poonam and her family had lived as outcasts on the fringes of a village in the Gangetic plains. Her father had a small income, despite being blind himself, with which to keep his wife and four blind children – Poonam and her three brothers. As Pawan had already told me, botched surgery in a rural hospital had made her brothers' blindness permanent, but thankfully she had not been sent there – ironically, probably because she was a girl.

A year earlier she had been screened and brought to Dr Shroff's by Project Prakash. Photos of her taken at the time show a withdrawn child, staring blankly ahead without expression, able to sense only light and shadows. But once surgery was completed, her recovery was rapid. A few days after her final operation she played a game of catch with the team. As they did for Junaid, Pawan and the team are now making plans for her to be enrolled in a good mainstream school. Poonam's ambition now she has sight is to become a doctor. ‘To help other children, like you helped me,' she told the team who cared for her.

Pawan and Tapan both cautioned me that when a patient's bandage is removed from their newly cataract-free eyes there's no ‘eureka' moment, no Damascene transformation, no effusive exclamation of ‘I can see!' Those of us who have always had sight are able to make sense of, in Pawan's words, ‘the confusing mess of colours, brightness and textures that impinge on our retinas every waking moment. We organise it into a meaningful collection of objects that transforms into a recognisable form. Because our ability to partition an image onto separate objects is so well honed that it seems effortless, we open our eyes and the world falls into place.'

According to Pawan, ‘The experience of a Prakash child soon after gaining sight is different. The newly sighted exhibit profound impairments. They are unable to assemble the many regions of different colours and brightness into larger aggregations. Many features of ordinary objects – the overlapping sections of two squares or a portion of a baseball delineated by lacing on its surface – are perceived as entirely separate objects, not component parts of a larger structure. It is as if the visual scene for a newly sighted person is a collage of many unrelated areas of colour and luminance, akin to an abstract painting … this makes it difficult to detect whole objects.'

Although this is how a newly sighted child experiences vision at first, Pawan says that their researchers then see interesting changes happening over time – in both the children's capabilities and behaviour – and in the patterns of activity the fMRI scans reveal in their brains. A recent scientific paper authored by some of the Prakash team paints a picture of a brain that remains impressively adaptable well into life. After surgery, and with the benefit of appropriate glasses, the brain seems to be able to reorganise itself quite rapidly, allowing a newly sighted child to process all the new sensory information he or she is receiving. As evidence, it's of vital importance because it contradicts earlier assertions that the brain is unable to cope with the sudden onset of visual stimulation after a critical period in early childhood. This could have a significant influence on whether blind children and teenagers are, in future, considered suitable for treatment.

Project Prakash's fMRI neuroimaging studies have revealed that gaining sight
can
modify the vision-related areas of our brains, even in people in their twenties who had been blind since birth. It has demonstrated the importance of motion, for example, in allowing our brains to categorise the world into distinct objects and from that learn to identify static faces, places and things. This is something most of us never even have to think about because we learn to see as infants. It is also something, as Pawan and Tapan have reported, that ‘provides a launch pad for studies that are sure to enrich our understanding of the processes by which we acquire our diverse [sensory] abilities.' It may turn out that the scientific ramifications of Project Prakash's work could end up being no less transformative than the individual surgeries that restore sight to their subjects.

PAWAN TOLD ME
that when the Delhi project started, he expected it to last five years. Just over twelve years on, he attributes its longevity to the fact that the longer the project continued, the more questions the team found to address. Why, for example, does the area of a blind person's brain that processes vision remain so flexible, despite never having been used for that purpose? And why did some children improve so much more than others, when their starting point – the blindness they had for an equivalent number of years – was the same?

The neuroscience being done in labs at MIT, Boston and IIT Delhi could also lead to ‘bio-inspired design' – that is, the creation of computer vision capability that models itself on human biology. Inadvertently, the Prakash studies have also fed into other research on autism. From looking at how blind and newly sighted children navigate the world, it appears that some of the hallmark features of autism – an insistence on uniformity and ritual, anxiety created by sensory overstimulation, enhanced abilities in particular fields – may be caused by sufferers' brains not having the same predictive abilities as people without autism, the lack of which means that events can seem to happen unexpectedly and without cause. As the work proceeds, Pawan hopes it will benefit autism diagnosis and therapy.