World Sight Day 2007 VISION for Children VISION 2020: The Right to Sight working together to eliminate avoidable blindness in children In our world, a person goes blind every five seconds and a child goes blind every minute. An estimated 1.4 million children are blind worldwide and millions more are visually impaired. Approximately three-quarters of blindness in children occurs in low- income countries where it has a far greater economic impact than in wealthy societies. In developing countries, 60% of children will die within one year of becoming blind and the remainder will, on average, spend 40 years without sight. 90% of blind children receive no schooling and the majority will not grow up to achieve their full potential. Thus, blindness in children accounts for nearly one third of the global economic cost of blindness, although it contributes less than 4% of its overall prevalence. Visual impairment in children not only has an impact on the child’s life; it also profoundly affects their families. Children can also miss out on educational, social and developmental opportunities when a family member experiences vision loss. Many of the common causes of blindness are readily treated or prevented: an incredible 75% of blindness is avoidable. In children, vigilance and early intervention against blinding conditions is crucial. The following stories are examples of interventions made with the help of organizations taking part in VISION 2020: The Right to Sight. VISION 2020 is a global initiative of the World Health Organization (WHO), with the International Agency for the Prevention of Blindness, and an international coalition of NGOs, institutions and corporations, all working together to eliminate avoidable blindness worldwide by the year 2020 *WHO 2002 KENYAto From child carer confident scholar Simila wants to be a doctor. It’s a big dream, especially for a 10-year-old who lives in a thatch hut 10 hours’ drive from Nairobi. Her mother Rose has been blind since before her daughter’s birth; Simila loves school but explains: “Many days I cannot go. If mother is sick or has to go somewhere, I stay home to help her.” It’s a common story. For every one of the more than 33 million blind people in the developing world, there are others, generally children and most often girls, who miss out on education or other opportunities to care for them. Simila arrived at the Baragoi District Hospital, the site of a four-day cataract and trachoma surgery clinic run by The Fred Hollows Foundation (FHF), leading her mother by the hand. They joined about 100 others who had heard that doctors were coming who could make blind people see again. Many suffered from cataract, a clouding of the lens that can be treated with a relatively simple operation to insert a tiny plastic intraocular lens (IOL). Rose was examined by James Maina, a Kenyan cataract surgeon trained by FHF. Shining a torch into Rose’s eyes, Dr Maina found the right was inoperable due to heavy scarring but the left eye had a small clear area. He decided to try inserting an IOL. After the operation, Dr Maina peeled the bandages off and wiped Rose’s eye clean. Moving away and raising his hand, he asked Rose to say how many fingers he was holding up. As Rose answered correctly, she and Simila broke into smiles of joy. They traveled home, Rose walking unassisted for the first time in years. She can now perform many tasks single-handedly and best of all, her newfound independence means that a world of opportunity has opened up for her daughter. KINGDOM OF SAUDI ARABIA Saving a twin’s sight Naif was born premature at 28 weeks, weighing 1200g and was in an incubator for a month. Naif, the first sibling of a twin Caesarean section delivery, was diagnosed with retinopathy of prematurity (ROP) in both eyes. His twin was diagnosed with late stage ROP and lost vision in both eyes despite undergoing vireo-retinal surgery. Naif underwent regular follow-ups with a retina specialist and thorough ocular examination revealed moderate astigmatism. He was prescribed glasses and was referred to the Ebsar Foundation, Jeddah for low vision care. In the third grade, Naif sat at the front and centre of his classroom, but still found it difficult to read from the blackboard until he was trained to use a distance monocular telescope. He could read his schoolbooks by holding them close up, but the use of a simple overhead reading lamp made things much easier. The Ebsar vision rehabilitation team provides advice and support as required, and continues to liaise with his family and school. THAILAND diagnosis Screening provides vital early Thammasak Chuthong spent much of his childhood with vision impairments. At age three, he underwent a cataract operation with IOL insertion but nine years later an examination at a local Sight for Kids screening revealed healthy and normal vision in his right eye, but in his left, an IOL dislocation as well as strabismus and amblyopia. Because the problem was caught early, Thammasak was admitted for pars plana vitrectomy, IOL removal and reinsertion of IOL with scleral fixation. At a later follow-up examination he proved in good spirits and, because of his restored sight, fully able to enjoy the pleasures of childhood. Thammasak is just one of the million children who have benefited from the Sight for Kids program, a collaboration of Lions Clubs International Foundation and Johnson & Johnson Vision Care. Sight for Kids is an extension of the Project for the Elimination of Childhood Blindness, an initiative of LCIF and the World Health Organization. BULGARIA sight of newborns New technology saves the Not long ago, a premature baby like Valeria would have had little chance for survival in Bulgaria. Born after just 28 weeks, she weighed only 510g but, because of improved neonatal care, Valeria joined the growing number of premature newborns to survive. Low birth weight opens the door to a number of potentially serious complications, amongst them ROP, for which early diagnosis and treatment are crucial. Yet in many Eastern European countries, the necessary equipment is either unavailable or outdated. With a grant from Ronald McDonald House Charities, ORBIS provided training and donated an essential piece of diagnostic equipment – the indirect ophthalmoscope – to the Specialized Eye Hospital in Varna. This enables ophthalmologists to identify various eye conditions in children, in particular the earliest stages of ROP. Now doctors in Varna can treat their tiniest patients with state-of-the-art equipment including a laser and a cryo unit, also supplied by ORBIS. These interventions have brought hope to Valeria’s family and the families of hundreds of tiny babies just like her. TANZANIA Surgery that transformed a family’s life Khadija lives with her parents in a one-room house in northern Tanzania. She was just one when her mother noticed “white spots” in Khadija’s eyes. She had no idea what they were or how they might be treated. Khadija’s mother had to watch her daughter constantly, even carrying her on her back while cooking so she could not wander towards the stove. Khadija could not tolerate the sun, forever closing her eyes. People would ask, “Why is your child always sleeping?” Khadija was not eating well and was bullied by playmates who took things from her knowing that she couldn’t see. At first the family turned to prayer, but then in January 2006 Khadija’s uncle persuaded her skeptical father (who was worried surgery might cause more problems) to take her to the Kilimanjaro Christian Medical Centre in Moshi (KCMC). Surgery was postponed twice due to anemia but finally, in May, Khadija’s right eye was operated on and her left a week later. Four months afterwards, Khadija’s mother reported that her daughter (now two) was always happy, lively and smiling. She herself is more relaxed, able to do chores while her child plays with friends – so the whole household is more congenial, and the father definitely a happier man. He never believed in surgery until he saw that his child could see again! INDIA Conquering a family’s sight loss Stickler’s Syndrome — a familial disorder referring to a combination of eye problems such as high myopia, vitreous degeneration and lattices degeneration in the retina – had already claimed the sight of his father and brother by the time Tohfuddin was brought to LV Prasad Eye Institute (LVPEI) in February 2000, aged just 19 months. The family had noticed that both eyes seemed larger than normal and white in the centre. A comprehensive examination revealed Tohfuddin to be at risk of numerous eye problems requiring lifelong management. He had congenital cataract and high myopia and needed to be checked for developmental glaucoma that could lead to irreversible vision loss. He was prescribed spectacles but remained under close follow-up. In August 2006, examination revealed advanced retinal detachment in both eyes, the right more recent than the left. Skeletal features such as a depressed bridge of nose and vitreous abnormalities confirmed the diagnosis of Stickler’s Syndrome. Retinal detachment surgeries offer best results if undertaken within a week of the condition’s manifestation. Detachment in children has a success rate of only 50% and is followed by the problem of glaucoma. Though an operation on Tohfuddin’s better right eye proved successful, glaucoma developed very quickly. Bold damage control measures averted a crisis and surgery to Tohfuddin’s left eye followed. Today Tohfuddin does well in class and can manage boardwork. On his last visit to the clinic he tugged at the doctor’s hand with a beautiful smile on his face: “Doctorbai, I have passed my exams and I am off for my holidays!” Vitreoretinal surgery would not be affordable for an Indian family of modest means; it is only due to the compassion and commitment of LVPEI’s global donor base that children such as Tohfuddin can find renewed hope and enthusiasm for life. AUSTRALIA of blindness Laser surgery prevents two lives Twin boys Harry and Jack were born extremely premature in February 2007, at 600g and 500g respectively. Amongst the many health problems such premature babies face is an underdeveloped blood supply to the retina; such infants once had a 60-70 per cent chance of becoming blind due to ROP. The twins’ parents went through a harrowing time, fearing that their children could be both blind and deaf. Pediatric ophthalmologist Dr James Smith, Chairman of Ophthalmology at Sydney’s Royal North Shore Hospital and the boys’ eye specialist, monitored the twins closely in hospital and discovered that both had early signs of ROP and needed surgery. “Both boys had laser surgery on both their eyes, and they’re looking really good now,” their mother Amy explains. “Without it, it was quite likely that they would have gone blind.” The twins’ vision will be monitored closely for five years and will require life-long eye checks. But, as Dr Smith reports: “With careful monitoring and laser surgery at a critical point, we can turn this disease around. These boys have a 90 per cent chance of having their sight preserved. This intervention is fabulously successful, and in all likelihood, children such as Harry and Jack will be spared a lifetime of blindness.” BRAZILtimely action Beating ROP with Congenital cataract and ROP are important causes of childhood blindness in Latin America but few children have access to early diagnosis and treatment. In Rio de Janeiro, a group of ophthalmologists working in a private clinic (Brazilian Institute of Ophthalmology), together with partners including economists, lawyers and businessmen, founded the Infantile Cataract Project. Its aim is to provide surgery, glasses, IOLs and follow-up for three years for low-income families. Guilherme was born with congenital cataract in both eyes. He didn’t walk, was considered mentally retarded and was isolated from other children. When Guilherme was two, he was referred to the Infantile Cataract Project in Rio de Janeiro. When Guilherme was operated on, his life changed virtually overnight. After surgery, he learned to walk and became very communicative. A happy, healthy three-year-old, Guilherme is now attending a regular school in Rio de Janeiro. Antonio was born blind because of congenital cataract in both eyes. At 18 months old, he traveled with his family to Rio de Janeiro from the state of Ceara, hoping to find some treatment. At first evaluation, he appeared very frightened and could not walk, even with help. Cataract surgery was performed in both eyes. Right after the first surgery he smiled at his mother and started to play with toys. Now he walks by himself, plays soccer with his father, and his mother does not know what to do to keep him quiet! Izabelle, now one year old, was born at 23 weeks’ gestation. With a very low birth weight of only 780g, Izabelle needed special care and was kept in the neonatal unit for three months. She developed severe ROP and was in danger of permanent visual impairment. Izabelle was successfully treated for ROP at two months old, while still in neonatal care. Now she is at home with her family and doing fine, learning to walk and to play with her toys, just like any other little girl. Thanks to vigilance, and early intervention, Izabelle has the chance of a normal life.