Deaf Doda Village

08.02.2016

World is a silent place for the children of this village in this frontier district. Although, as per doctors, it is possible to give these deaf children the power of hearing as well as speech, but government has chosen not to pay any heed towards their silent pleas.
Dadkhai, a remote village is home to 82 deaf and mute people, as per records compiled by health authorities. However, beyond compilation of these figures, no intervention from state or central health systems has taken place despite several political promises and a full-fledged government program to prevent deafness. In 2014, an Indian Council of Medical Research team conducted screening of 2473 villagers and found 33 children below the age of ten were hearing impaired. In addition, 39 adults were also deaf and mute.
Incidentally, more female children than male children suffered from this birth defect. The screening revealed that deafness affected 2.5 percent of the male children (0-10 years) and 5.01 percent of the female children (0-10 years).
Government’s apathy towards the plight of these children, who are being forced to lead a life with this disability can be gauged from the fact that the file that was to mobilize a medical team to visit the village and salvage its children from the deep and dark abyss of deafness has gone down some dark abyss itself. Since 29th of October 2014, no communication has been exchanged between state health authorities and ICMR officials, for reasons inexplicable. “There were some technical isssues,” said a GMC official on condition of anonymity adding that ICMR people first wanted a better weather to go to the village and later just forgot the issue.
Asked whether state health machinery had reminded the central team, the official answered in negative. In 2009, the then Union Minister for Health, Gulam Nabi Azad had announced that a medical team will be sent to the village. Medical teams, as per media reportage, have gone and come back, but not done what was needed – medical and psycho-social interventions.
At SMHS Hospital’s ENT Department, 15 children have been operated upon in one year for congenital deafness and these children, with the help of speech therapy, are on the path of a normal life. The surgery comprises installation of an electronic device called cochlear implant, inside the ear of the child and connecting it with the brain.
Dr Manzoor Lattoo consultant ENT SMHS Hospital said, “For the best outcomes, it is important that children born with hearing impairment be treated before they reach the age of two. Then it is possible for the child to have the same level of speech development as other ‘normal’ children.”
But this Doda village neither has the access to the tertiary care hospitals, nor the awareness about how their children have a chance of leading a normal life. Poverty ridden, and fraught with myths that the congenital birth defect is a ‘curse’, they have accepted the disability of their children as a fate that cannot change. For there are many adults who have lived through with deafness with no aid and support whatsoever. “Sign language is quite common there,” said a doctor who had seen a few children of this village.
Two national programs that could have ended this silence for these children have failed to cross the mountainous barriers of the terrain of this far flung village. The National Program for Prevention and Control of Deafness (NPPCD) is operational in 192 districts of 20 states of India, but J&K is yet to come under its ambit.
The state has not argued the case to impress the need to establish a system where deafness could be detected and intervened into. This is in spite of the fact that more than 500 people with deafness have been registered at SMHS Hospital of Srinagar in just one year.
In addition to NPPCD, Rashtriya Bal Swasthya Karyakram that was launched in early 2014 envisages early identification and early intervention for 30 conditions, 13 of which need surgical procedures. The programme covers 4 ‘D’s - Defects at birth, Deficiencies, Diseases, Development delays including disability. The cost of treatment of these problems is covered under the programme. This could have meant free treatment for all the deaf and mute newborns and children of Dadkhai, but the program is yet to take off fully in JK. In SMHS Hospital six children were operated with RBSK ad in one year.
The number is small considering that a PG student screening children at LD Hospital for congenital defects found seven out of 1800 screened were born deaf. “This is one hospital. There might be so many born with deafness but not detected at birth in other hospitals,” said the PG student of ENT at GMC Srinagar.
“For Dadkhai children and for other children born with this congenital defect, deafness is not their fate but what our apathy gifts them for life,” said a senior ENT faculty at GMC Srinagar.