In the Bonesetter's Waiting Room (24 page)

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 older. 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.

It's impossible to deny that such research has provided hugely important insights into conditions that cause blindness, but Pawan's proposal for Project Prakash had the very welcome added value of supplanting such laboratory studies with a real-world problem: once the children had recovered their sight, advanced brain-scanning technology could be used to reveal any neurological changes that occurred as they regained sight and started navigating the visual world. The children would stay, with their families, at the hospital for at least a week after surgery to ensure their full and satisfactory recovery. This would also give Pawan's scientists an opportunity study the initial period of sight restoration and development, and continue to monitor it during follow-up appointments.

The technology required by Project Prakash to do all this is provided by well-equipped private hospitals in Delhi. The most expensive piece of kit – which Dr Shroff's did not have – was a functional Magnetic Resonance Imaging, or fMRI, machine. Essentially a giant, extremely powerful magnet, the technology was developed only in the 1990s and even today is rarely found outside the wealthiest hospitals or research centres.

Such machines can easily gobble up a budget of $3 million, but the value to the researchers is priceless. Rather than cutting up the brains of kittens, Pawan and his team can use the fMRI images not only to see both realtime images of human brains (which is what a basic MRI machine costing a mere $1 million does) but also, by analysing patterns of blood flow and oxygen absorption in the visual cortex revealed by fMRI equipment, to infer how active (or inactive) were those regions of the brain related to vision. Put simply, the more active an area of the brain is, the more oxygenated blood it needs.

Data from fMRI machines are increasingly being used to explore all kinds of psychological and philosophical questions about the human brain and behaviour. A few years ago some of my colleagues at University College London used fMRI to investigate love (they showed people who were in love photos of the object of their affection, as well as other people they knew) and announced that they had identified four areas in the brain that were most active when their subjects became romantic. Scientists have also been looking at how our moral compass relates to brain activity – by asking subjects under what circumstances they'd be willing to push someone under a train, for example, or to judge someone's trustworthiness from a photograph. Whether the results of such studies are reliable (or, more worryingly, how they might be used to manipulate us if they are) remains an open question.

Pawan's use of the machine was altogether more practical. The subjects in his study ranged in age from children of around seven to men and women in their early twenties. Data from their fMRI studies could help determine how late into life the brain can still reorganise itself. In addition, Pawan and colleagues at MIT, as well as his former student Dr Tapan Gandhi (now teaching the first ever neuroscience programme at IIT Delhi), planned to look at whether other senses, like touch or hearing, had hijacked the parts of the brain usually reserved for processing vision.

As well as just picking out the ‘visual' elements of a scene – shape, colour, location – the brains of sighted people connect visual perception with sound, smell, touch and taste. When I met Tapan in his office at IIT, he illustrated how effortlessly our brains cope with multi-sensory tasks. He showed me two cartoon-like images – one that looked like a cloud, the other like a spiky explosion. They reminded me of the Mr Men characters Mr Daydream and Mr Sneeze.

‘If I told you that one of these shapes was called Maluma and the other was called Takete, which one would you say was which?' he asked.

I didn't hesitate: ‘Maluma is the rounded cloud one,' I replied. ‘Takete is the spiky version.'

Tapan told me that this is the answer that the vast majority of people give (irrespective of their native language) and asked me how I had decided. I told him Takete sounded sharp, Maluma smooth.

‘The brain is very interesting,' Tapan said. ‘It correlates imagery with structure. So from touch or shape we get some information, and at the same time you get other, visual information. The brain is somehow able to establish the link between haptic features – how something we touch feels – and visual features. We see how we feel the object. But the question is, how is the brain doing this job?'

For the Project Prakash team, understanding complexities like this was what the fMRI data would help them do.

Despite the amazing capabilities of fMRI machines, most hospitals have little use for the kind of detailed information it generates; data that an fMRI scan reveals over and above an ordinary MRI. It was amusing to hear one private hospital's confused response to Project Prakash's enquiry of whether they had a functional MRI machine they might borrow: ‘Yes,' said the voice on the other end of the line, ‘our MRI machine is functioning perfectly.'

The availability of one that was both functional and functioning was a lucky break for the project's researchers. Neither the Delhi Prakash team nor, indeed, its visiting foreign researchers had ever seen a facility quite like the one the private hospital offered. Their fMRI machine was housed in a slick room, furnished with latticed screens, low lighting and calming decorative statues of Buddha, giving it the air of a five-star hotel spa. The only drawback was that, understandably, the hospital's own patients took priority, so the machine was sometimes unavailable until the early hours of the morning. Despite this, the generosity of the loan meant that the data the neuroscientists needed could be gathered relatively easily.