05/07/2008
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Charity Case Study Writing and PhotographyCase study for blindness charity ORBISBurma, December 2004 Words and Photography by Tine Frank The first words to spring to mind when meeting Aye Aye Nyein and her family are abject poverty. Although nearly five years old, Aye Aye does not look much older than three and is clearly malnourished. Both her parents are farmers, and with the little money they make they barely manage to provide for their six children. To make matters worse, Aye Aye’s mother is often too ill to work due to allergy-related illnesses, leaving much of the burden on her husband’s shoulders.  When Aye Aye was born blind the family was devastated. “We tried everything and spent all the money we had trying to cure her,” says her father. “But the doctors said there was nothing that could be done. ORBIS is our last hope.” This last hope lies in the abilities of the ORBIS volunteer doctors who have arrived in Mandalay to take part in a two-week Flying Eye Hospital programme. One such volunteer is US cornea specialist Dr William Basuk for whom this is the tenth outing as a volunteer for the blindness prevention charity. Aye Aye is presented to Dr Basuk and his trainee Dr Hlaing on the first day of his week in Mandalay and initially Dr Basuk is hesitant to operate on her. “Aye Aye’s condition is very complicated,” he explains. “Her eyes are completely white so we can’t see the pupil, the iris, the retina, we can’t see anything. Another important issue is that we only have five donor tissues, so there is a limited number of patients we can treat.” The tissues Dr Basuk has brought with him are from the San Diego Eye Bank of which he is the Director. The eye bank runs a scheme called the International Cornea Project where excess corneas from hospitals around the States are collected and distributed internationally – sometimes for a fee and sometimes gratis. The corneas for the ORBIS programme were given for free. Of the 23 patients Dr Basuk sees, four are bilaterally blind adults who are all immediately selected for surgery. For the fifth cornea the choice is between a man in his forties, who has 20/20 vision in his good eye, and Aye Aye. “It’s a very difficult choice to make,” says Dr Basuk. “On one hand we have a patient with a really good chance of a successful outcome but with perfect vision in his other eye. And then there is Aye Aye who, due to her complicated condition and the fact that she was born blind, has a comparably low chance of regaining much vision. But really, if we did nothing, she would have no hope of ever seeing. So we decided that we really have nothing to lose and to give Aye Aye the chance. Should the transplant fail she is really no worse off, but just with some improvement, we can change her life for the better. And she is only five years old, she has her whole life in front of her.” Aye Aye’s parents are ecstatic that their daughter will have an operation by the ORBIS doctors. “We are so grateful and will pray for all of you,” says her mother. “No doctor has ever been able to do anything for her, they all gave up. We understand that she may only get a little vision back, but even a small improvement will make a great difference to her life.” There are an estimated 250,000 blind children and adults in Myanmar, and just 183 ophthalmologists to serve the entire population. Few of these are specialised in paediatric ophthalmology and most doctors are hesitant to take on complicated paediatric cases, like Aye Aye’s. Opportunities for further training is limited within Myanmar, and only a few doctors, often with the support of international NGOs, go abroad for fellowship training. ORBIS has been working in Myanmar since 1991 and has over the years conducted ten Flying Eye Hospital and hospital-based training programmes in Yangon and Mandalay. The relationship is an excellent example of how ORBIS through continuous support builds capacity in the long term, something that Dr Basuk, who was in Mandalay on a hospital-based programme in 1999, saw for himself. “It was great coming back here and meeting the doctors I worked with five years ago,” says Dr Basuk. “When I arrived at the airport, three of the doctors I worked with last time were there to greet men and the first thing Dr Hlaing said to me was: ‘Do you remember you taught me how to tie the sutures?’ That was just great! In 1999 they weren’t doing corneal transplants, so to come back now and realise that they are actually doing it on their own is fantastic.” Since doing his first ever transplant with Dr Basuk in 1999, Dr Hlaing now does around 20 a year, at the same time training the hospital’s two post-graduate students in the technique. This ‘ripple-effect’, which is at the core of ORBIS training programmes, will ensure that more and more patients will receive improved care in the years to come. An eye bank has also been established at the hospital, ensuring locally harvested donor tissues. For Dr Hlaing, the ORBIS programmes are unique opportunities for himself and his colleagues to update and improve their skills. “The only way for us to get specialist training is when international doctors come to Myanmar, other than that, the best we can do is try to teach ourselves through books and videos. We rarely get a chance to go abroad for continued education – in the past only two ophthalmologists in the entire country have had the chance to go to India for cornea fellowships.” In a military regime like Myanmar, doctors are completely dependent on the government when it comes to continued medical education, procuring of new equipment and enlisting of post-graduates. Making the most of the unique attraction of the Flying Eye Hospital, ORBIS routinely invites government heads and policy makers on board to bring to their attention issues of avoidable blindness. During the Mandalay programme two key decision makers, the Minister of Health and the Local Commander for the Mandalay region, toured the Flying Eye Hospital. Both impressed by the efforts made by ORBIS and the local ophthalmologists, they will hopefully be positively influenced when making future decisions concerning the country’s health care system. Meanwhile, oblivious to all of this, Aye Aye’s parents are anxiously awaiting her operation, which takes place on the final surgery day of the programme. They arrive at the Flying Eye Hospital where the ORBIS nurses do their best to comfort Aye Aye who is understandably uneasy with all the commotion. After a while she sits quietly on a bed in the recovery room, every now and then turning her head to where she hears voices coming from. After the surgery, both doctors are pleased with the result. “The transplant went well,” explains Dr Basuk. “We knew it was going to be difficult because her eye was malformed and the cornea was completely opaque. The ultrasound test showed that the normal space between the cornea and the iris, the anterior chamber, wasn’t there, meaning that her iris and cornea were basically stuck together. When we did the surgery we were able to remove her cornea and there was some scarring between the cornea and the iris, which led to the pupil being a little bit abnormal but as far as we could tell the lens behind it looked clear. So technically it went pretty much as well as we could have expected. It’s a little early to know what level of vision she will have, when someone is born blind, there are so many other factors that go into it. I am not expecting her to become an airline pilot but if she can see something, if she can see her mother’s face, if she can see colours, anything would be an improvement of what she had before.” 
Two days later, Aye Aye seems transformed from the girl that arrived
less than a week earlier. She is smiley and animated, happily playing
along with her parents who keep holding up their fingers in front of
her face, waving at her, clicking their fingers, amazed with the
instant change they see in their daughter. “We are so grateful to
everyone,” says her mother with a big smile on her face, the worried
look of the previous days having completely vanished.Six weeks later, ORBIS Staff Ophthalmologist, Dr Pamela Tarongoy, returns to Mandalay to follow up on the surgical cases. Aye Aye’s father is there but without his daughter, having misunderstood the instructions to bring her along for examination. ORBIS staff hurriedly arranges for a car to take him home to collect Aye Aye, agreeing to pay the rather unreasonable price the driver demands. However, when they return three hours later the driver humbly hands some of the money back. “I saw how these people lived,” he says quietly. “They have nothing, they don’t even have a roof over their heads. I don’t want to charge full price for them.” Dr Tarongoy examines Aye Aye and apart from two loose stitches that will be removed the following week, she is happy with the results. Aye Aye’s parents still find it hard to believe the progress Aye Aye is making. “Before her operation she couldn’t see anything, she only reacted to light,” says her mother. “Now, if we hold something in front of her eyes, she follows it and she reacts to colours, particularly red. Things just seem to be easier for her, simple things, like walking on her own. We are so very happy, thank you everyone,” she repeats over and over.  Dr Hlaing is equally content. “Every programme I learn something new, so I keep building on the things I have learnt. It was great working with Dr Basuk again, he is an excellent surgeon. He has magic fingers.” Aye Aye’s parents can only agree. |
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