Saturday, October 25, 2014

Changing beliefs one person at a time

This post is written in furtherance of activism for the Article 25 campaign.

When Dr. Najoo Varkey’s close friend, a doctor, wanted to retire due to ill-health, she asked Dr. Varkey to step in to volunteer in her place. Not wanting to disappoint her friend, she took on the mantle with voluntary work at The Sheila Kothavala Institute for the Deaf, or SKID – one of the oldest schools for the hearing impaired in Bangalore, India. She has also been actively involved in path-breaking research and activism surrounding the issue of consanguineous marriages being responsible for deafness in about 50% to 55% of the children she has worked with.

Dr. Najoo Varkey
How did you arrive at the correlation that consanguine marriages are the reason for deafness?
Despite being a Pediatric Consultant doing private practice, I never had a single patient with a hearing impairment – and the few disabled patients that she did have either had polio or rickets. Working in a different environment of sorts, I worked with 200-odd children who had no medical records, no parents accompanying them to give their medical history or to carry out requests for investigations and the like. The class teachers came with every class and did their best to help. But it was daunting! However, it also seemed like a situation crying out for attention and so I stayed on. It took almost a year to examine each child, meet the parents and to record a proper medical and family history and to make a permanent medical record card for each child. This was done because of the total involvement of the principal, the school secretary and ALL the teachers – a highly dedicated group who, to this day, spare no effort when it comes to the welfare of the children, academically or otherwise. It was the recording of the family history that brought out the problem of consanguineous marriages being responsible for deafness in 50% - 55% of the children.

What are consanguineous marriages? How do they affect future generations of a family bound by consanguineous marital ties?
Consanguineous or Blood Marriages are marriages between close relations – such as first cousins or uncles and nieces. The latter custom is mostly prevalent in Karnataka, Tamil Nadu and Andhra Pradesh. Each year, as I checked the children and got their histories, I became aware of a pattern emerging. If, say, 30 children were admitted, then 16 or 17 would have a history of consanguineous marriages between their parents. As I had never heard of this condition, I wondered, at first, whether this was all in my imagination. But when this continued over 4 to 5 years, I felt I had to either prove it or disprove it - because, if real, then something needed to be done. This took me to the library at St. John’s Medical College, Bangalore, where I went through several ENT (Ear, Nose & Throat) Journals. And, lo and behold there it was! Several large families had been recorded with hearing loss due to consanguinity, in many of the European journals! This, for me was proof that I was not imagining the whole problem.

So you had the problem on hand. What happened next?
Then came the next big question. What should I do, and how should it be done? It was a Blank Wall. It was the first time that the school staff, the members of the school committee and members of the Deaf Aid Society had become aware of this condition. I kept talking to senior medical and administrative professionals, from well known institutes for the HI, like Mysore, Bombay, Delhi and the like, who visited the school. Some of them seemed aware of the problem but not very concerned and thought that not much could be done. I continued with my work but with the terrible plight of the children and their families always at the back of my mind. In 1999 – 2000, two things happened that brought a glimmer of light to the end of this dark tunnel. The All India Institute of Medical Sciences (AIIMS), New Delhi had apparently been doing research on this very topic and a research team, headed by Dr. Manju Ghosh, Head of Genetics Unit, Department of Pediatrics, was visiting schools in South India to collect blood samples from the children and their families for the study and mapping of the genes responsible for causing this type of deafness. SKID was one of the schools selected for their study. This was how I met Dr. Ghosh who has been a constant support over the years. She was very happy with the school as all the records were available to the team. Dr. Ghosh told me that when she got back she would do her best to see what could be done to spread awareness about consanguinity and deafness. Coincidentally, another Institute of high repute, Jawaharlal Nehru Centre for Advanced Scientific Research (JNCASR), Bangalore, was also doing similar research, headed by Dr Anand, and their study material was the entire staff of their Institute along with their families. From all the statistics compiled by leading Institutes of the country and leading scientists and doctors, it is estimated that the deaf population arising due to consanguineous marriages was approximately between 6 lakhs and 8 lakhs. It is not a figure to be dismissed lightly. After ten long years of effort, when my daughter had to have a throat infection checked up, I went to Dr. Pilloo Hakim, who was then Professor and Head of the Dept. of ENT at J.J. Hospital and Grant Medical College. After finishing the check-up, on my daughter’s suggestion, I spoke to Dr. Hakim who told me to submit a paper on consanguinity and deafness to the Association of Otolaryngologists of India. It was accepted by the committee – and I went on to present it at the 54th International Conference of Otolaryngologists of India, at Bangalore in January, 2002.

With the information having gotten out, you decided to take on the awareness quotient. How did that pan out?
The question then arose as to what we were to do with this information and how we were to spread awareness. At my request, the School Committee met to discuss this issue. The single most persistent suggestion was to make a film. However, it turned out to be a case of ‘fools rush in where angels fear to tread’. I got the films made by the internationally renowned film makers Konarak Reddy and Kirtana Kumar. They put their hearts and souls into this venture and it became a family affair—including the school. The filming took place at SKID and included the children, their parents and their teachers. Written permission had to be taken from the parents to say that they had no objection to being shown on film, along with their children. Almost 80% of the people we asked agreed – ironically because they wanted the future generations to know about the harmful effects of consanguineous marriages. These films are in English, Kannada, Tamil and Telugu and are available free of cost to spread awareness.

Is there anything that the law offers in this regard? Particularly concerning consanguineous marriages?

The Persons With Disabilities Act, is an exemplary piece of legislation but its implementation is questionable, as is the case with most legislations. The tragedy is that it is the most disadvantaged people with the least resources at their disposal and mostly the rural population, who are the most affected. Every day, more and more such children are born. The problem becomes even more tragic when one realizes that the “Deafness due to Consanguinity” is one hundred percent preventable. No expensive prophylactic drugs – as for measles, hepatitis, polio campaigns – are needed. Spreading awareness is all it takes to save lakhs of children from deafness and other disabilities. At the start of the Campaign, my ‘thought process’ was to spread awareness but, at the same time say “Stop Consanguineous Marriages, ban them by law.” In October, 2009, through Dr. Ghosh, I attended the 4th International Conference on Birth Defects and Disabilities in the Developing World - translating research into cost – effective services for Care and Prevention, at New Delhi. One of the delegates was from Brazil. Brazil is very much like India – large, poor and not very literate. Her organization was dealing with spreading awareness concerning a particular medical condition.I quote one of her statements: “Cultural Competency” by Martha Carvalho (Brazil): Do not forbid the Custom. It is crucial to provide information at appropriate comprehension & literacy levels & in the context of each family’s cultural beliefs and practices. Secondly, find ways to let people know that you are interested in what they have to say is vital to building trust. She and her colleagues lived with the families, followed the above tenets and achieved a lot. Since 2010 I have been trying to follow her wise words.