Two-year-old Guhan has saucer-like ears, pretty large for the rest of his face; as if to make up in form for the lack of function.
Guhan was born profoundly deaf, a rare condition causing it: he did not have an inner ear and auditory nerve, the part that allows us to hear sounds. A cochlear implant could not help him hear, but that’s where his luck turned, in more ways than one.
Doctors at the Madras ENT Research Foundation (MERF) have placed an implant in his brain — a procedure called auditory brainstem implantation (ABI) — which will help the boy distinguish a variety of sounds.
Common birth defectA year after he was born, Guhan’s parents, Lakshmi and Ilayaraja from Thanjavur, noticed their firstborn was not responding even to loud sounds. That’s when they brought him to Chennai and had him tested for hearing loss.
Doctors at MERF were shocked. “To our utter horror, we found he was in that rare one per cent born without the inner ear. It’s a sinking feeling to tell the parents that the regular cochlear implant that has helped many other kids will not work on their child,” says Mohan Kameswaran, senior ENT surgeon who also heads MERF.
Hearing loss, apparently, is the commonest among birth defects in the world. One in 1,000 children has profound hearing loss. In 99 per cent of cases, it is caused by problems in the inner ear.
In the remaining one per cent, as with Guhan, deafness is caused by the absence of the inner ear and/or the nerve that connects the ear to the brain, says Dr. Kameswaran.
Guhan is not the only one, however. Benina, four-year-old daughter of a painter from Pudukottai, also suffers from the same condition.
“ABI was an option, but the families could not afford it. Under the Chief Minister’s Comprehensive Health Insurance Scheme, funding is given only for cochlear implants. The parents, however, did not give up,” says Dr. Kameswaran.
“We went to different government departments, sometimes without any idea what we were doing. Finally, we landed up at the health department, and sanction was given under the insurance scheme,” says Ilayaraja.
Benina’s father too managed to get sanction for the entire sum of Rs. 18.25 lakh.
A team of neurosurgeons, headed by M.C. Vasudevan of the Voluntary Health Services, worked with Dr. Kameswaran and a team of audiologists over five hours to place the implant in the brain.
Guhan had his surgery on November 11, and Benina, on November 28. Doctors say intensive audio and speech therapy must follow, in order to assist them to first hear sounds, and then, make sense of it.
There is hope, though. Sri Akshaya, a five-year-old who had a brainstem implant a year ago, gives them that optimism. She can now hear and speak and wears her tiny earpiece with panache. What’s more, she even goes to regular school. Hear! Hear!
