It’s an ancient marriage custom, practised mostly among traditional communities in Africa, South Asia, West Asia and other such areas. And then the first child arrives. Completely deaf
Dr Najoo Varkey, a paediatrician, worked alone for 33 years trying to understand why so many deaf children in the school came from families where the parents were cousins or uncles married to nieces
The pressure cooker whistle goes off suddenly, shattering the peace. Your old mother starts. But your first child, now around seven months old, doesn’t even blink. She continues cooing and gurgling. Soon enough, you go to the paediatrician, worried something may be wrong. More tests are done and you learn, with profound dismay, that your baby was born deaf.
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A year or so later, another child comes along. He, too, is deaf. You now have two deaf children.
Deaf children do not learn language or speech, since they cannot hear, and are often cruelly called deaf and dumb. In their bleak, silent world, nothing makes sense. Their clumsy, sometimes incongruous, responses lead their parents to conclude, wrongly, that the child is mentally retarded or, god forbid, possessed by a demon.
It can take a long time, sometimes forever, to realise that your adorable child is deaf.
It can take even longer to understand that you, the parents, may be the cause of that deafness.
The father in the story is real; he is Nagaraj Reddy, wife Parvathy. When they talk about their two children, their eyes brim over and their voices break with pain. But here’s the thing—Parvathy is the daughter of Nagaraj’s elder sister. They were under pressure from their families to marry even though neither particularly wanted to.
“If we had known then what we know today, we would never have married,” he said.
Nagaraj is one of countless Indians who agreed to a consanguineous marriage, often under family pressure. They married a first or second cousin. Or an uncle married a niece.
Always, neither understood the dreadful horror their marriage was going to unleash on the children they would sire—not just deafness but any of a host of birth defects from malnutrition, deformation to cognitive impairment.
Yesterday I spoke with a frail, 89-year-old woman, a lifelong paediatrician, who for 33 years has been single-mindedly chipping away at the problem, finding ways to tell people about consanguineous marriages and preventable deafness. Her name is Dr Najoo Varkey.
The word wizened describes her perfectly. Blinking behind glasses, she is alert and attentive, missing nothing around her, memories past and present intact. Over 33 years ago, as a practising paediatrician, she began offering free services to examine deaf children at Bengaluru’s Sheila Kothawala Institute for the Deaf. It was not easy: most children had no birth or family details. Each child took about a year to document in detail.
But then she began to notice an odd thing—about half the deaf children she examined came from parents who had been closely related to each other before marriage. Consanguineous marriages.
Driven by nothing more than a feeling that something was dreadfully wrong and needed to be fixed, she began to gather information to understand the problem. Najoo Varkey is driven by empathy and compassion, not donor funds, and her fuel is her keen scientific intellect. Nothing could stop her.
First question: Why does marriage between close relatives even cause deafness?
An embryo receives genes from both parents, strung out along strings called chromosomes. Each parent contributes 23 chromosomes, half of their own set, which join to become the blueprint of the human-to-be. When the parents are unrelated, their genes will be diverse. In consanguineous marriages, many of the parents’ genes or chromosomes will be identical. There may be multiple copies of defective, disease-causing genes.
Such as the one that causes Non-Syndromic Recessive Deafness.
The specific gene that causes deafness when relatives marry is Connexin26, snug inside chromosome 13. It was found to be behind deafness in about 20 per cent of the children in two studies, by the AIIMS in Delhi and the Jawaharlal Nehru Centre for Advanced Scientific Research in Bengaluru.
Leading the list were the four south Indian states of Kerala, Tamil Nadu, Karnataka and Andhra Pradesh. Nearly half the marriages there are consanguineal, specially among impoverished rural communities.
About 52 per cent of deafness in India today is caused by consanguineous marriages. That means about 8.5 lakh of 84 lakh deaf in India are that way because their parents should never have married.
What’s the solution? The law is an ass. It will just ban such marriages and just drive an age-old cultural practice underground. But everything Dr Varkey has done in three decades shows that any young person who understands the tragic future that awaits a consanguineous marriage will run from it. Without hesitation.
You can do something, though. Send an email to pervinvarma@yahoo.com and say you’d like to help. They’ll send you a cute, free little book in which all the results of Dr Varkey’s formidable labour of love have been put together by her granddaughter and other family members, so beautifully that you could give a TEDx talk on it or a discussion at the next anganwadi meeting.
Ask for it. You’ll love the book’s name: Don’t Marry Your Niece!
Here, viewed from there. C Y Gopinath, in Bangkok, throws unique light and shadows on Mumbai, the city that raised him. You can reach him at cygopi@gmail.com
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The views expressed in this column are the individual’s and don’t represent those of the paper
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