Project Phongsali: How Lune became blind. Can anything be done?
Last year when I first visited Sop Houn, I met a little girl who is visually impaired; each of her eyes is clouded over by white patches that I assume are either cataracts or corneal scars. There wasn’t much more that I could do last year than take photographs to pass around among my physician friends.
I found the little girl again last week and have had some lengthy conversations with her and her family. The girl’s name is Lune; she’s currently ten years old and has a twin sister named Leein, who has excellent vision.
It was Leein who first gave me insight into her sister’s rough path in life. I said to the little girl, “You have perfect eyes and your sister has problem eyes. What happened?”
Without hesitation, Leein said, “When Lune was born, she hit her head on a chair.”
That clue left me pondering, “What kind of head injury at birth might have resulted in the damaged eyes that I’ve seen and photographed?” It was puzzling, but Leein’s story was consistent with what other villagers have told me, that Lune has been blind “since she was born.”
When I eventually met the twins’ mother, armed with the clues that I’d already gathered, I said to her, “ I understand that on the day your daughter was born she hit her head on a chair. Was that when she started having problems with her eyes?”
The mother burst into laughter. After she collected herself, she assured me that it wasn’t an injury at birth that damaged her daughter’s sight. Then, she gave me the whole story:
When Lune’s mother went into labor, she had no idea that she was expecting twins. Without complication, she delivered the little girl they would later name Leein; the attending midwife cut the infant’s umbilical cord and began cleaning her. Suddenly, the mother felt another powerful contraction, pushed hard, and delivered a second baby with such force that the infant skid off the bed and landed on the floor next to the leg of a chair (thus spawning the family legend that Lune hit her head on a chair when she was born).
Both midwife and mother were obviously surprised, but also disappointed because the second infant lay silent on the dirt floor, apparently lifeless. The midwife declared Lune dead and left her on the ground while she attended the first-born.
Suddenly, on the ground near the leg of a chair, Lune coughed and sneezed, sneezed and coughed and began to breathe. The midwife immediately scooped her up and saw to her needs. Within minutes she appeared to be as strong and vigorous as her twin, free of complications from the temporary neglect (and, from hitting her head on the chair).
For the next nine months, both girls thrived and hit all the normal developmental milestones on time. Lune’s mother has but a single photograph of the girls taken during their first year of life; the two peas-in-a-pod look bright eyed, cheerful and healthy. However, caring for twins proved too much for Lune’s mother, so she turned Lune over to her own older sister, a married women unable to bear children herself. For Lune, it wasn’t a big step, either physically or emotionally. Her aunt had been helping care for her since birth; niece and aunt already shared an emotional bond. And, her new home was in the neighboring house, just one door from where she was born.
About the time Lune was learning to walk, tragedy struck. She was out in the rice field with her aunt and uncle when a storm came up. A powerful wind preceded the rain, and everyone — aunt, uncle, and baby — got dirt blown in their eyes.
Lune’s uncle suggested that his wife take the baby home rather than weather the storm in the field. The aunt put Lune on her back and quickly made for shelter. Part way home, a cutting rain hit, drenching both Lune and her aunt. When the two finally reached home, Lune’s eyes were caked with rice hulls and grit.
From that day forward, for the next three months, Lune had crusty, red, infected eyes. Eventually, the family took the little girl to a town across the border in Vietnam in search of a doctor who could treat Lune’s eyes. The family remembers with chagrin that the doctor took one look at Lune and exploded in anger. “Three months! Why did you wait three months to bring this girl to me?” he demanded. “Now there’s nothing that I can do!”
The parents returned to Sop Houn with some medicine the doctor gave them. They’ve long since lost the container and have no idea what the medicine was. Something they put in Lune’s eyes daily until the bottle was empty. Since that time, on the doctor’s advice, they have given Lune fish oil capsules as a source of Vitamin A, in the hope that it can arrest any further loss of vision.
The family can’t afford a steady supply of the vitamin. When they have money Lune takes capsules; when they’re short of cash she doesn’t. And, they have no idea about dosage. Sometimes they give Lune one or two capsules; sometimes they give her six or eight. It all depends on how many pills are on hand and how long they guess it’s been since she last had any at all. The capsules are unavailable in this part of Laos, but an itinerant Vietnamese peddler brings them a new supply from across the border whenever they have the money to pay.
Lune’s mother said her daughter goes to school and is learning to write, but she struggles with reading because “the words are too small.” She also said Lune can see better in dim light than in bright, and that when she plays outside in strong sunlight she can hardly see at all. (Perhaps, when her pupils contract in bright light, the scars above cover a greater portion of the pupil?)
Yai and I devised an eye exam for Lune, based on no more experience than our each having taken such exams ourselves. In the end, one thing was clear, Lune has almost no vision in one eye and whatever vision remains in the other is just adequate for her to navigate around the village, but not sufficient to succeed in school without adapted materials.
When Lune put on my reading glasses and repeated our vision test, she told Yai that the symbols, letters and numbers in front of her were clearer and easier to see, but in truth, her performance didn’t much improve.
I offered Lune my sunglasses and asked her to repeat a few parts of the exam out of doors in the bright sunlight to see if the dark glasses helped, but she was too shy to be seen wearing them.
Last year an NGO dedicated to helping the visually impaired opened an office in Oudomxai with the intent of training Lao doctors at district hospitals to treat patients with eye problems. The project, when fully operational, will bring the first-ever eye care to three northern provinces: Luang Namtha, Oudomxai, and Phongsali.
Yai called that organization and learned that at the moment they have no doctors on staff who can provide treatment. One of their physician trainees is currently studying in Vientiane; the other in Thailand. In a couple of months, both will be back in Oudomxai and will begin treating patients with their newly acquired skills. In the future, the organization hopes to conduct “outreach” efforts in the provinces, but at this time, no districts have been chosen.
Yai and I plan to take Lune and a couple of other visually impaired villagers to Oudomxai next week, even before the trained physicians return. We’re told that the staff member holding down the fort while the physicians are absent is trained to evaluate and then classify patients. We figure that the best we can do is to get these villagers on somebody’s list and, perhaps, gain a priority status for this district. Then, from Wisconsin I can pepper the NGO with phone calls and email reminders that there are people in Sop Houn in need of care. (I could fill a bus with children I’ve met so far who have lazy eye, pink eye, crossed eyes, or eyes crusted shut with conjunctivitis.)