Of never losing hope

P Thrisha, 9, daughter of daily wage workers, presented at LVPEI Vijayawada 2 years ago with poor vision in both eyes since birth. She had vision of only light perception with inaccurate projection of rays in the right eye and could appreciate hand movements close to her face in her left eye. Along with total cataract in both the eyes, she had inoperable retinal detachment in the right eye. 

Under very guarded visual prognosis, cataract surgery improved her vision to 20/500 in 2 months, which was not a great visual outcome, so she was referred to the Center for Sight Enhancement (CSE). On assessment, her distance vision improved to 20/80 with a handheld telescope and N18 with a stand magnifier. Considering the family’s underprivileged and illiterate background, Dr Niranjan Pehere was thrilled to hear from the father during the 14 November Children’s Day Support Group Meet that the girl was not only optimally utilizing the low vision devices but actually doing well in school now that her interest in academics had perked with better vision. He hopes other families can be inspired to make the best use of LVPEI’s services and never lose hope.

So the paper flower can bloom

Little Um Lylas (Paper Flower), with support from the Sultanate of Oman, has been traveling every 3 weeks for over one and a half years now to LVPEI Hyderabad in India to receive treatment for retinoblastoma, an eye cancer that can be fatal if left untreated. Parents Muna Kamees and Ahmed Sultan Al-Rawahi say the only noticeable symptom had been redness and excessive tearing in both her eyes at 7 months of age. No one in the family had suffered from anything like this. 

Um Lylas has undergone 12 cycles of chemotherapy (2 sessions, 6 cycles each) and is now receiving Transpupillary Thermotherapy or TTT laser. On her last visit to the hospital in December 2014, Dr Swathi Kaliki, Consultant and Eye Cancer Specialist, was happy to share that the retinoblastoma had regressed but they would have to wait and watch for any improvement in the child’s vision. Muna Kamees is relieved that her daughter is finally on the road to recovery and a possible normal life can be looked forward to for her.

Reviving a rare, “lost” surgical procedure

A unique and rare Open Sky Vitrectomy (OSV) surgery was performed for the first time in India, to a patient in Stage 5 Retinopathy of Prematurity (ROP), by Dr Subhadra Jalali and Dr Bhupesh Bagga, significantly on Children’s Day 14^th November 2014. Not many surgeons in the world can do this “nearly lost” surgical procedure, which was revived and modified by the team after Dr Jalali underwent an evening of mentorship in Boston with Prof Tatsuo Hirose. 

OSV was popular in the US and Japan in the 1980s when they had faced an epidemic of ROP blindness in children. Prof Tatsuo Hirose from the Schepens’ Eye Research Institute, Harvard Medical School had pioneered the surgery and taught it to many of his fellows. With the decline of ROP Stage 5 epidemic in the developed countries (thanks in good measure to the strict implementation of ROP and newborn eye screening guidelines), the surgery slowly went into disuse.  

India is currently witnessing a similar spurt in ROP cases where we are now seeing at least 4-5 babies per week at LVPEI with Stage 5 ROP, referred not only from small towns across India but also from the neighbouring countries, especially Bangladesh. While a majority of these cases have a clear cornea and can be operated using closed globe techniques, at least 20-30 % cannot be operated by the more popular technique due to corneal scarring that results from progressive lenticulo-corneal adhesions. Dr Jalali managed to access a couple of precious recordings from the time of Prof Hirose’s active practice (he had lost most of his ‘spool’ tape recordings - those used before the advent of VHS), and meet up with the professor at Boston where he patiently explained the step-by-step procedure that Dr Jalali was able to adapt and use for the first time in India. 

The follow-up of the case after a week showed that the child was progressing well in terms of opening up of the funnel of the retina and a clear graft, so improved functional vision could be expected, something that would have usually taken up to a year to obtain, if at all. At three weeks the mother was very excited that her child who was quite inactive so far was now very responsive to bright lights around and suddenly had become active and interested in surroundings - a very promising sign indeed! This breakthrough certainly lends new hope for children with Stage 5 ROP who were so far considered inoperable, and the buoyant Dr Jalali is optimistic of further modifying the surgical technique for use on Stage 5 FEVR as well!