For more than 25 years, I have had an increasing involvement with the management and rehabilitation of children and adults, who were born with a birth defect of the Spinal Cord viz. Spina Bifida. During these years, there have been some incidents and occasions which have had a deep impact on my understanding and connect with Spina Bifida and its medico-social aspects.
One such landmark moment, that made me connect emotionally with the cause of Spina Bifida (SB) happened in the early nineties when I was a resident doctor in the Department of Pediatric Surgery at the King Edward Memorial Hospital (KEM) in Mumbai.
One busy afternoon, when I was on call, an elderly farmer couple walked into the ward holding an infant wrapped in a soiled cloth. I asked them to wait until I finished doing a dressing of another patient and then took them into the examination room. They were from a village near Nashik and had brought their 9-month-old girl for treatment. She had a large Meningomyelocele – a severe form of Spina Bifida – which had caused significant paralysis of the Lower Limbs. And of course, she had the large bulging back swelling of the Meningomyelocele.
After examining her, as I started to write my notes, I asked them her name. Pat came the reply from her father, “NAKOSHI”. I looked up in surprise and asked again about her name. This time the mother replied confirming that her official name was true ‘NAKOSHI’, which meant “UNWANTED” in Marathi.
This pretty looking girl was their third born girl child. Being born a girl, a 3rd one and that too with a major birth defect had made her Unwanted. This innocent girl would grow up being constantly reminded of the fact that she is Unwanted! I castigated the parents for their terrible and inhuman act. But the words of a young urbanised doctor, apparently disconnected from the tears and toils of a rural farmer, held no water with the Dhoti and Navvari (nine-yard saree) clad parents.
The smile on the girl’s face was captivating and I remember being deeply disturbed as I entered her name on the official papers. The girl was admitted. We would do some tests and then operate on her back. She would be discharged after a week or so …. but she would always remain Nakoshi (Unwanted).
That day, more than 25 years ago, this innocent Nakoshi, kindled my desire to do more than just operate on such children born with this birth defect. I decided that I would also have to work to make these children wanted.
Recently, a few years ago, an item in the newspapers caught my attention. In Satara, Maharashtra an NGO had organised a grand renaming ceremony to rename all the Nakoshis of Maharashtra. More than 200 Nakoshis – girls from the age of 5 to adults who were teachers – were to be liberated from the daily reminder that they were Unwanted.
And, just last year, during my lecture series on Birth defects and Spina Bifida, while interacting with several Obstetricians in various parts of India, I was told that in most States girls continue to be named Unwanted. In Bengal, she may be ‘Ayacita’, while in Tamil Nadu ‘Tevaiyarratu’. My encounter with my Nakoshi was almost 30 years ago, but it is sad that this practice still exists across the country.
The Human Rights Commission must recognise this as a gross violation of Child rights. But I am in a dilemma whether the poor uneducated parents should be punished for this? I tend to believe it is our social system and society to blame. Because in our country for the marginalised farmer, who is contemplating suicide, sadly, the whole world seems Unwanted.
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