Bangalore based paediatrician Dr Najoo Varkey’ has written a book “Stop Marrying Your Niece! (or uncle, or cousin)", highlighting the linkage to hearing loss. Shivani Maheshwari, editor PatientsEngage reviews the book and interviews Dr. Najoo Varkey on how she came to study this linkage of hearing loss with sanguineous or blood marriage and what she hopes this book will accomplish.
Hearing loss is one of the most severe forms of disability and the second most common impairment in the world. A World Health Organization (WHO) report suggests that around 6.3 million people in India suffer from either complete or partial deafness, and of these at least, 50 lakh are children. Even though deafness is common globally, experts say that there is a need for awareness and to increase the level of attention paid to this issue. It can cause profound damage to the development of speech, language, and cognitive skills in children.
Dr Najoo Varkey, well known Bangalore based paediatrician has gallantly taken up the cause of deafness among children. Her focus is on children in the southern states of Kerala, Karnataka, Tamil Nadu and Andhra Pradesh. The hearing loss amongst these children is the result of consanguineous marriages or marriage between individuals who are closely related. What distresses and deeply grieves her that this hearing loss can be 100% avoided and prevented with education and awareness. Her observation spread over three decades and her growing conviction motivated her to write a book - Stop Marrying Your Niece! (or uncle, or cousin) – One doctor’s fight to overturn a social custom and prevent deafness.
“This book is about the work that I have been doing at the Sheila Kothavala Institute for the Deaf (SKID), one of the oldest schools for the hearing impaired in Bangalore from 1989 till the present. It deals with the tragic problem of consanguineous or blood marriages – (Between uncle-niece and/or first cousins) that are responsible for deafness and a host of other disabilities.”
“My hope is that the publication of this book will create an awareness that “deafness due to consanguineous or blood marriages is 100% preventable” (David P. Haxton), and that we can all join in the efforts to work towards preventing thousands of children from being born deaf or with other serious abnormalities.”
The book mentions - It was the recording of family history that brought out the problem of consanguineous marriages being responsible for deafness in 50-55% of the children. From the above statistics, compiled by leading institutes of the country and leading scientists and doctors, it is estimated that the deaf population due to consanguineous marriages is approximately between 6 lakhs and 8 lakhs.
Dr Varkey’s PDF book - Stop Marrying Your Niece! makes an impassioned plea against consanguineous marriages delineating its damaging impact resulting in deafness and disability amongst thousands of children. The book is the outcome of painstaking and meticulous examination and findings and presentation of a systematic content. Her research is corroborated by similar studies conducted by All India Institute of Medical Sciences (AIIMS), and Jawaharlal Nehru Centre for Advanced Scientific Research (JNCASR), Bangalore.
Thousands of children are deprived of the joys of hearing, when truth be, they can actually lead a normal, healthy life if consanguineous marriages could be prevented and stopped. That is the core drive and mission of Stop Marrying Your Niece – a burning campaign led by a 90-year paediatrician. This issue deserves a lot more support given the impact on congenital conditions.
Interview with Dr Najoo Varkey
Congratulations Dr Varkey for your exceptional book - Stop Marrying Your Niece! featuring your fight to prevent hearing loss among children due to consanguineous marriages in the southern states of Kerala, Karnataka, Tamil Nadu and Andhra Pradesh. What motivates you at your age to be so goal-oriented?
My work on this issue has spanned 34 years and it is still an issue that needs addressing and that is what motivates me even now.
Consanguineous marriages are also associated with an increased risk for congenital malformations and autosomal recessive diseases like thalassemia, sickle cell. Was there any particular reason for your focus on deafness?
I first worked as a doctor at the Sheila Kothavala Institute for the Deaf (SKID) in Bangalore which is only for the education of deaf children. It was there that I discovered the serious consequences of consanguineous marriages.
You are the Honorary Pediatric and Medical Consultant to the Institute at Sheila Kothavala Institute for the Deaf for the past 24 years. Is there a continual awareness campaign and education with strong emphasis on the damaging results of consanguineous marriages for the children at the school to prevent such negative social norms from carrying-on?
Yes at PTA meetings this issue is now regularly brought up and always stressed. I also got awareness films and other communication material made and they were given to all major broadcasters in the South who carried them on their channels to spread awareness on this issue (details of all the awareness work is in the book)
Are there any interventions like hearing aids, cochlear implants or other assistive devices provided for children with hearing loss in these areas?
Yes all of the children use hearing aids. Cochlear implants were not as successful.
What was the most challenging aspect of writing this book?
The objective of writing the book was to make people aware of this issue and how critical awareness is to bring about change especially in such a deeply entrenched social custom. Also making the technical aspects of the issue accessible and easily understood was a challenge, which my granddaughter Ava Rego who designed the book did very well.
You have created radio and TV spots as part of the campaign. What has been the impact?
While I don’t have data on the impact as these have been awareness messages, there have been instances where these films were screened and potential consanguineous marriages were prevented.
Are you planning any next step as a follow-up?
At the launch of the book, we had many NGOs working in the 4 southern states who participated and took copies of the book and links to the films to their work areas. We are also trying to take the book to the key Health ministries in the states to see if they can build awareness on this issue into their work on Prevention of Disabilities.
Update on 12 Mar 2023 :
It is with deep regret that we inform our readers, that Dr. Najoo Varkey passed away last month. We will always be grateful to her for sharing her insights with our readers. We hope that her work on consanguineous or blood marriages will continue to garner support and will pave the way for more awareness and social changes.
