Friday, 4 October 2013

Samreen overcomes congenital glaucoma

Hailing from the Defence Colony in Kanpur, Samreen Naseem is a happy person today having surmounted the difficult problem of bilateral congenital glaucoma.Glaucoma (kaala motiain Hindi) is a condition where the fluid pressure inside the eye rises to such a level that it damages the delicate structures of the eye, especially the optic nerve.

She had first presented as Baby Bushra, a 18 days old child with bilateral congenital glaucoma, a genetic disorder and also Phthisis bulbi in the right eye. To address the problem of congenital glaucoma, trabeculectomy was performed on her left eye to relieve the intraocular pressure by removing part of the eye’s trabecular meshwork and adjacent structures. The Phthisis Bulbi affecting her right eye, on the other hand, is a shrunken, non-functional eye that results from severe eye disease, inflammation or injury. Dr Mandal operated upon her while she was under the care of the reputed ophthalmic surgeon Dr N N Sood at the All India Institute of Medical Sciences (AIIMS). 

Later on, while on a visit to Chennai, the parents had read about LVPEI in a news magazine and came to the institute with hope. After Dr Mandal took up the case, the situation has more or less stabilized and had not deteriorated any further.With trabeculectomy having been performed seven times on her left eye, her vision was restored to 20/200 in the left eye. Samreen is now a girl driven by ambition and the zest to enjoy life like any of her peers. She is all praise for Dr Mandal who she says is not only a very qualified doctor, but a great human being. 

Thanks to him, she never required special care and had been able to study like any other child by using eye drops to maintain the intra-ocular pressure in her eyes. She even managed to excel in her studies, securing 94% marks in her 12th standard. Equipped now with an M.B.A degree, she says she wants to either pursue her higher education and earn a PhD, or perhaps like to be involved in a business. 

Little Sennai from Eritrea overcomes Pseudo Peter's Anomaly

In August 2011 we were blessed with our second child Sennai. Though born very healthy, his mother soon noticed a strange looking spot in his left eye. On being taken to the only eye hospital in Eritrea, the doctors assured that the spot might clear out subsequently. However, when the child was 3 months old, he developed secondary glaucoma that caused acute pain which made him suffer continuously for two days. The doctors then prescribed certain eye drops to ease the IOP and relieve the child of the pain. 

At the eye hospital in Eritrea the doctors however, did not completely rule out retinoblastoma. It was a nightmare. For 30 days, I stopped working and started hunting for internet cafes to do a bit of research on the matter. We decided to look out for places outside Eritrea for treatment. However, leaving the country was a challenge as one needed special permission from the Ministry of Health.

Finally, when Sennai was 4 months old, we found ourselves in UAE Dubai and headed to City Hospital. On learning that there were no specialists in Pediatric Ophthalmology, we visited Moorefield’s Eye Hospital in Dubai Healthcare City where on further investigation, the two consultant doctors came to the conclusion that it was a Peters Anomaly. The hospital however quoted a cost of 60,000 Dirhams (a little more than 16,000 USD) for the surgery; with subsequent treatment to cost another 1000 USD. 

This cost was truly prohibitive and the doctors were also not conclusive with their diagnosis. But they ruled that it was certainly not a case of retinoblastoma. For me as a father, this was a great relief and worth all the trouble and expenses we had to bear to travel to expensive Dubai. Considering the cost and at the recommendation of family and friends and my own research, we headed to Hyderabad in India. We reached LVPEI on February 5, 2012. 

Once here, Dr Muralidhar, Dr Subhadra and another glaucoma specialist examined Sennai under Anesthesia. The diagnosis was Pseudo Peter's Anomaly, a rare condition that needed surgery. This was the worst nightmare a parent could go through. The decision to allow a sharp blade to cut the eyes of a 5 months old child is not easy. Only a parent who went through the same experience can understand it. At that point, everything becomes questionable. So as parents, we confronted the hospital with the bold question of why should we trust this doctor? We even asked them to convince us of the abilities and experience of the doctor who was designated to do the surgery. The personnel at LVPrasad were patient enough to explain everything to us, and to give us as much information as we needed regarding the experience, talent and reliability of the doctor who was designated to do the surgery.

Armed with such information, we spent a night without any sleep. A decision had to be made. The next morning (February 6, 2012), we agreed for the surgery. This led to the longest 3 hours of our lifetime. The last minute of the 3 hours is one of the moments I am most thankful to God. We finally got to see our son, with no pain, with his eye covered, but peaceful. To the surprise of the doctors, the child was very patient and very cooperative. In fact they said he did not even cry till he got sedated. Never did he cry or tried to remove the patch from his eye after the surgery. 

For me, this is the deed of God. God gives us challenges to overcome, but He also accompanies them with miracles. 

Three weeks, down the road, Sennai’s wound recovered without any complication. Two years after his surgery, Sennai came to Hyderabad on his third trip to India. In this visit, we are told that, the child is improving well. 

(As narrated by the patient's father Ambasager Mebrahtu)

Overcoming Ocular Albinism and Nystagmus

This is the story of B Yadagiri a client of the Centre for Sight Enhancement at LVPEI who overcame his handicap and is now gainfully placed as a senior technical officer with Bharat Dynamics Limited (BDL), a Ministry of Defense (MoD) organisation. 

B Yadagiri was born in 1983 to a lower middle class family. Soon after his birth, parents and relatives were in for a shock when they noticed the newborn's white body colour and hair. The little child also had his eyes and body shaking considerably. But somehow the boy survived and was soon admitted to primary school where the temple priest of the village taught in the Telugu medium. The priest observed little Yadagiri's difficulty in reading and writing and promptly reported this to his parents. 

This was in 1986-87 when there were no reputed private eye hospitals. The boy was taken to Sarojini Devi Eye Hospital where he was prescribed glasses, but the thickness and weight of the glasses was too much for the small child. The doctor also informed the parents that consecutive consanguinous marriages in the family could have been the reason for the condition of the child. When Yadagiri was in the 5th standard in 1995, a doctor from a private practice declared him to be unfit for higher studies and suggested his parents stop sending him to school and look for alternative options for his livelihood. 

Though disappointed to hear this, the boy’s father neither stopped his education nor did he discriminate him against his other siblings. This Yadagiri opines is one of important reasons for his success today. However, he found it increasingly difficult to read or write, and managed only with support from his Telugu teacher. Socially too he faced ridicule and teasing from other children who called him names (white haired boy, old man, etc) but he was never disappointed or discouraged. 

In 1997, a relative who had undergone surgery at LVPEI, recommended the institute to Yadagiri. At the Centre for Sight Enhancement (CSE)), he was surprised when Dr Vijaya Gothwal asked him to dye his hair. When he failed to do so the next day, she said that she would not examine him. So he returned to the hospital having dyed his hair. He was told that his was a case of Ocular Albinism and Nystagmus and it could not be cured as it was a genetic disorder. But the doctor and the patient did not give up hope; they tried the use of various techniques and low vision devices like magnifier, peaked cap (to avoid sunlight as he was also sensitive to heat) and full sleeved shirts to cover his hands, use of tinted glasses (which gave a lot of improvement), black ink pen, hand held magnifier, telescope, etc. 

Later, when Yadagiri joined a polytechnic course, the telescope proved very useful. He ended up scoring 91% and was the top scorer in his class. He went on to procure a government certificate for the physically handicapped that facilitated special privileges, and pursued his higher studies in engineering and is now gainfully employed with BDL. He confidently takes care of the documentation of various projects for his company, and can also drive a bike and a car. He has recently married Deepthi who is an electronics graduate.

Yadagiri expresses his gratitude to LVPEI and in particular to CSE and believes that all eye hospitals should have low vision centres to help their clients.