A paediatrician’s fight to prevent deafness due to a social custom

In a special school for children with hearing impairment in Bengaluru, a paediatrician noticed a pattern while examining the familial records of the children — 52% of them were deaf because of consanguineous marriages between their parents.

“It started in 1989, when I went to do some voluntary work at Sheila Kothavala Institute for the Deaf, Bengaluru. When I started working, I used to record the history for each child who was admitted every year. Then, when examining the records, I started noticing a pattern. If 30 children were admitted in a year, at least 16 to 17 of them were a result of consanguineous marriages between uncles and nieces or first cousins. This custom is quite common in the southern part of India,” 89-year-old paediatrician Najoo Varkey recalled.

Consanguineous marriages caused several problems, one of which is deafness, she said. Since then, Dr. Varkey has taken several efforts to spread awareness on preventing deafness due to consanguineous marriages. On Friday, her work over the last 33 years culminated in the launch of her book Stop Marrying Your Niece! (or Uncle, or Cousin) - One Doctor’s Fight to Overturn a Social Custom and Prevent Deafness.

In the book, she outlined that a team of the All India Institute of Medical Sciences, Delhi, found that Connexin 26 on Chromosome 13 was the most common gene responsible for Non-syndromic Recessive Deafness. The southern States of Karnataka, Tamil Nadu and Andhra Pradesh have an incidence of 30%, 20% and 20% deafness due to consanguineous marriages, while the national incidence was 20%.

In her project — Consanguinity: The Silent Destroyer — she found that 68% of the children with hearing impairment from consanguineous marriages came from lower income groups, with a monthly family income of up to ₹2,000.

Dr. Varkey has launched an awareness campaign that included films and several advocacy meetings. “Preventing this deafness does not need expensive immunisation or medicines. This can be eradicated by simply spreading the message,” she said.

The need to educate and facilitate conversations in the community was stressed during the book launch.

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Printable version | Aug 15, 2022 8:21:23 pm |