In the Bonesetter's Waiting Room

by Aarathi Prasad

  ‘I returned to India after that,’ Pawan continued, ‘and visited a few places, in Uttar Pradesh, near Calcutta, in rural areas. I got to see how truly terrible the situation was. I was thinking of starting a personal initiative, but I realised I couldn’t really help that many children on an academic’s salary. Then I thought that, if I could tie it to the study of visual learning I was undertaking here [Pawan was at that time investigating how the brain recognises objects, scenes and sequences], I could tap into far greater resources. MIT was remarkably supportive. They saw the merit in this global impact.’ Pawan also got the United States Department of Health and Human Services’ National Institutes of Health on board to help with research staff salary costs. In addition, he secured funding from several charitable foundations and individuals in the USA and in Delhi, money which went towards paying all costs for the screening, treatment and surgery of any child who needed it. It was the start of Sinha’s Project Prakash.

  Project Prakash – named after the Sanskrit word for light – started its work in the rural population centres of India, within some of the most densely populated states, Delhi’s close neighbour Uttar Pradesh in particular. Uttar Pradesh is huge. If it were an independent country, it would be the world’s fifth most populous, with around the same number of residents as Brazil. Pawan’s aim was to bring vision to blind children and, in doing so, to illuminate some of the deep questions of science. In particular, the project explores one of the greatest mysteries in cognitive science: how our brains are able to recognise people, places and objects fast and accurately and why we have largely spectacularly failed to get machines to do the same.

  ‘My background is computer science,’ Pawan told me. ‘I moved somewhat later into neuroscience. But that computing background is what propelled me to think about the mechanisms at work in our brains. How does the brain make sense of the visual world after these children gain sight? There’s no explicit instruction to tell them, “That’s a face; that’s a chair; that’s a glass.” So how is the brain able to organise the world into distinct objects? That’s an important question – how do we organise our sensory inputs – what are some of the important cues for the brain to do so?’

  I was fascinated by the way Pawan had set up a project that provided universal benefits for everyone involved: children with visual impairment got treatment and the scientists got detailed studies of the human brain in the process of learning to see, which in turn could have enormous benefits for the study of artificial intelligence. The information gleaned from the project carried benefits previously unavailable to researchers: before, studies had largely employed non-human subjects (predominantly kittens). Studies of how vision develops can also be done with young babies, as their brains and eyes get used to the visual world, but there are drawbacks: babies, of course, cannot understand a researcher’s questions and respond, but they also find it hard simply to stay awake. Project Prakash was doing the same experiments, but with older children and young adults, who were able to discuss their own impressions and experiences clearly and in detail.

  Despite this, there were many unknowns when Project Prakash started out: how to find children in rural India who needed eye surgery, how to provide them with the correct care when they were found and then, given the scale of the need and the size of the country, how to provide them with the best follow-up care. Even if they managed to solve these problems, there was no guarantee that correcting the sight of the children would provide the data they needed: these children were no longer infants and nobody knew for certain whether at age seven (or fourteen, or eighteen) a child would be able to recover sight, even if the apparatus in their eyes were to be made functional. Would the brain be able to process the information coming in from newly functioning eyes, or would years of darkness have put a stop to that?

  Pawan wondered about this at length. Even though his proposal was well intentioned, he had to ask whether, for children like the two he had seen hanging on to their mother’s ragged sari that foggy winter day, medical help would be coming too late. After all, that was exactly what previous studies in animals all suggested: the 1981 Nobel Prize was even awarded to two researchers, David Hunter Hubel and Torsten Nils Wiesel, who had described the dramatic negative consequences on brain development of kittens when they were deprived of vision. I asked him why he persisted anyway, where others would not have bothered.

  ‘Good question,’ he said. ‘As I was looking at the data on the critical periods in early life that required intensive use of the eyes and visual brain circuits, I realised there were lots of caveats you had to keep in mind. Most of the animal studies looked at blindness in one eye, whereas these children had grown up with visual deprivation in both. Although it’s surprising, we know that depriving vision in one eye has worse consequences for that eye than if both eyes had been deprived together. Whether sight could be acquired after treatment late in childhood was still largely an open question … but there was enough ground still to explore.’

  We spoke for some time about the education of blind people, their health and prospects, his experiences so far and what the future might look like. Our chat ended only when he had to take a call from the Dalai Lama’s office.

  In mid-July I travelled to Delhi to see Project Prakash for myself, twelve years after it officially began. In 2003 Pawan had approached the city’s Dr Shroff’s Charity Eye Hospital in Daryaganj, having heard about its outstanding paediatric facilities and that their doctors would welcome the opportunity to engage in research to learn more about how children’s vision develops after eye surgery. The hospital also already had rural outreach programmes. One of the doctors I was going to see was their paediatric unit lead, Dr Suma Ganesh, who had since helped supervise Project Prakash’s screening of 42,000 children in Delhi and the rural parts of the states surrounding India’s capital city.

  Driving in from the wide and leafy roads of south Delhi, en route to the hospital, the short commute to the old city revealed the unmistakable traces of the mighty empires who have ruled India. It is one of the reasons I have always loved this city – a twenty-minute drive in Delhi is also a journey through centuries. Its multiplicity of planned settlements have been dictated by its geography and its politics, sitting as it does between the end ridge of the Aravalli mountain range and the sacred Yamuna River; a place that Afghans, Sikhs, Persians, Marathas and Mughals claimed as their own before the British made it their capital and independent India kept it that way. Still visible in gardens, golf courses and on the sides of main roads are monumental domes and pillars and robust rubble walls, the visible commemorations of the spoils of wars and the will of gods; memorials of love, life and death and the power of commerce, apparent in the souk-like markets and shiny shopping malls.

  South of what had once been Shahjahanabad, the Mughal capital, was Raisina Hill, a symmetrical new power centre commissioned in 1911 by the British Raj, with their Viceroy’s Palace (now the Presidential Palace) taking pride of place on the Aravalli foothills. There were several advantages to this place, not least the fact that the views from that height were liberally studded with monuments of empires past and the tombs of Mughal emperors, the symbolism of which would not have been lost on the British. The geometric system of roads that took me from the new city into the old were created by Sir Edwin Lutyens, one of the architects of New Delhi, whose first blueprints for a Manhattanesque grid-plan were vetoed on the grounds of impracticality, for they had failed to consider the city’s eccentricities – dust storms principally, but presumably also the intense summer heat that rises above forty degrees centigrade. Instead, he was encouraged to take inspiration from the grand plans of Rome, Paris and Washington DC – long avenues, classical forms. The Anglo-Indian Rome of his subsequent drafts comprised triangles and hexagons revolving around roundabouts whose spokes were richly verdant, wide, tree-lined streets, designed to accommodate, unimaginably at that time, the burden of a full 6,000 vehicles. Just over a hundred years later, I sat for a while in a
traffic jam with some of the city’s now nearly nine million registered private and commercial vehicles that at some point jostle for right of way on those same, shaded avenues.

  Once we escaped the gridlock it was only a few minutes before we saw the red stone and rubble-built old Delhi Gate, once one of the entrances to Shahjahanabad but long since separated from the mostly destroyed city walls. Beyond it were the labyrinthine streets of the city, based on a 400-year-old layout. Inside was one of the main conduits from New to the old Delhi: the Daryaganj neighbourhood, credited for the invention of butter chicken and famous for its kitab bazaar, a Sunday market for the printed word stretching two kilometres along its pavements. It was also the home of Project Prakash, which was now based within a wing of Dr Shroff’s Charity Eye Hospital, established in the old city when the government donated land and funding for its expansion from a small clinic in Chandini Chowk in 1914, only three years after New Delhi’s foundation stone was laid by King George V.

  The wing housing the project was completed in 1926. Its striking pink-and-red colonial-era architecture, marked prominently with the date it was built, dominates Kedarnath Lane, a road bordered by the old city’s main artery on one side and the park in which Mahatma Gandhi was cremated on the other. Set back from the street within gardens, its two storeys are beautifully fronted with arcaded verandas running the length of both floors. The hospital has always been a charitable foundation and, after some turbulence in recent decades, it runs on a sustainable model in which more than fifty per cent of its work is offered completely free, supported by funding from Eicher, a major Indian commercial vehicle company (and owner of Royal Enfield, makers of the iconic motorcycles). As a result, it was recently upgraded and modernised, so that its old stuccoed wings surrounding a garden courtyard now house the high-spec technology of twenty-first-century ophthalmology.

  In an office overlooking the hospital’s front lawn and Kedarnath Lane beyond it, Dr Suma Ganesh filled me in on the hospital’s history and how she came to meet Pawan Sinha. Dr Suma had been north India’s first paediatric eye surgeon, trained by an expert who had come to India from South Africa. Until 2001, she told me, there was no paediatric ophthalmology in India, save for some scattered work in Madras and Hyderabad. I made her repeat that to me: 2001 – the year I was pregnant with my daughter – seemed barely a heartbeat ago and I found myself wondering what I would have done had we been in India at the time and she had been born with a serious eye defect. In 2001, according to the Census of India report, there were between 280,000 and 320,000 blind children in the country.

  ‘This was the first hospital to get funding for a paediatric unit,’ Dr Suma told me. ‘India is seen as being at the forefront of community-based eye care. Many projects from here have been modelled in African countries. But most of it is adult-based.’

  It was true that there seemed to be a proliferation of eye camps in India. There have long been numerous, long-running, widely respected ventures. Dr Murugappa Chennaveerappa Modi, the pioneer of mass eye surgery in India, began running camps in British India, in the years before independence. Like Devi Shetty’s heart surgeries, Modi’s prolific work in remote Karnataka villages (of around 700 surgeries a day) drew contemporary comparisons with Henry Ford. The Shankar Netralaya (temple of the eye) was another mass venture, which started in 1978 as a hospital with a missionary spirit. It is now a super-speciality institution which performs 100 surgeries a day to people of any socio-economic background. It may be that in a country of such scale and such need, no number of medical offerings is too many. But despite the number of charitable eye camps, until 2001, what Dr Suma and her colleagues noted was a particular gap that still existed. ‘It was just not organised for paediatrics,’ she continued. ‘And children’s eyes are very different from adults’. The surgery is more complex, follow-up has to be different.’

  Paradoxically, one of the knock-on effects of the lack of eye care for children was, as Dr Suma and her colleagues had experienced, a level of reluctance among parents to put their children forward for surgery. After several debacles involving local or national health programmes in India – such as the sterilisation scandals – there is sometimes an underlying suspicion in rural areas of large scale medical programmes. Parents’ reluctance was often well founded, based on true tales of infants who sustained irreparable damage during well-meant attempts to correct sight surgically.

  Cataract removal in a child is much more complicated than in an adult, a consideration that some surgeons still failed to take into account. The procedure involves breaking up the hardened opaque lens, then making an incision through which to remove the tiny fragments before inserting a new clear lens. All of this requires general anaesthetic and intensive follow-up care. Dr Suma and her colleagues told me that in rural areas there are sometimes simply no anaesthesiologists. The crucial follow-up appointments are expensive for the patients to attend, or are ignored. In addition, as I had seen throughout India, a lack of access to quality healthcare combined with poor services and corruption, and a dearth of trained doctors, well-resourced government hospitals or health insurance, led what would amount to hundreds of millions of people to seek treatment using dubious techniques or from untrained, inexperienced or superstition-based healers.

  Pawan mentioned several instances in which families had relied on folk medicines and orthodox beliefs, generally with tragic results. ‘I remember visiting a crowded hostel for the blind in New Delhi and meeting the residents,’ he told me. ‘Many of them had remarkably bad cases of corneal opacities. Upon getting their histories, I found that a common refrain was that they had been treated for some minor eye ailment – maybe an infection – by a “medicine man” in their village, which greatly worsened their condition and led rapidly to total blindness. One of the “treatments” I heard mentioned a few times involved pouring honey or even sugar crystals into the eyes and forcing the child to keep the eyes closed. It’s brutal to even imagine the child’s ordeal.

  ‘Parents are sometimes told by the priests or other village elders that their child’s blindness is due to bad karma, the child’s or their own, in a previous life. Seeing blindness as cosmically determined fate reduces people’s motivation to seek treatment.’

  Even when modern medical care is involved, Pawan told me, the quality of such care can leave a lot to be desired. One case he described to me involved the siblings of a twelve-year-old girl called Poonam, who I would later meet at the Daryaganj hospital. Her brothers, Pawan was disturbed to learn, had been operated on in a hospital in the neighbouring state of Uttar Pradesh without general anaesthesia, leading, unsurprisingly, to terrible complications.

  For some, operations like this resulted in permanent, untreatable blindness. And this wasn’t just a problem for children. Only a matter of months before my trip, in late 2014, a story broke in the media about an eye camp in the Punjab in which around twenty-four elderly people lost their vision completely after cataract-removal surgery. Conditions at that camp, the reports said, had been unsanitary, infection had set in and the damage was then irreversible. Sadly, this type of story was not news to Dr Suma. She knew well how intricate the eye is, how careful surgeons had to be to avoid causing damage or infection, especially in young children, and also, significantly, the consequences of poor care and practices and reliance on superstitious belief. They would have to address both these issues if they were to provide high quality care to those who needed it most.

  The obstacles facing visually impaired children were so great that the hospital was forced to be more proactive in its approach. From 2001 onwards Dr Suma had been involved in paediatric outreach. ‘That meant going further and further out of Delhi. There was such a need and it isn’t stabilising,’ she said. In 2001, Dr Suma told me, only around a hundred young patients were seen at the newly opened children’s unit at Dr Shroff’s. By 2006 this number had risen to 8,000 and today it is around 20,000. ‘Even so, some parents ask us to defer the surgery until the children are olde
r. We had to do a lot of mother education. We had twenty-five field workers knocking on doors, screening children. Pawan saw our work on the web and approached Dr Shroff’s. I remember meeting him in the canteen of the hospital back in 2003 when he visited us to talk about his ideas.’

  Pawan’s aim was to help congenitally but curably blind children who had remained untreated, and in the process he would gain a powerful insight into how vision develops.

  Traditionally, such studies are carried out by experimentation on animals. For example, research into amblyopia, the condition widely known as ‘lazy eye’, involves stitching up one eyelid of normally sighted kittens or baby monkeys. Some of these would be ‘dark-reared’, kept in a light-tight shell, before being killed and their brains dissected for study.