"Just two minutes before you called he had an epileptic seizure. We just put him back on the bed, he is still flailing uncontrollably," he says, breaking into tears over the phone. His son Paarvendhan had his first seizure when he was just a day old in 2008 and since then his condition has only deteriorated. "Now he has a minimum of five seizures a day and on some days this goes up to 150," says the father.
Thirumeni's plea is the first of its kind after the Supreme Court held the fundamental right to live with dignity includes the right to die with dignity as well, says his counsel N Kavitha Rameshwar. This was decided in a common cause case in March and the court even laid down the guidelines for passive euthanasia.
A division bench of Justice N Kirubakaran and Justice S Baskaran in the Madras HC has admitted the plea and directed the state to suggest an independent panel of senior doctors which could recommend expert members to the committee to be constituted by the court. They will then be directed to examine the child in question.
The matter is set to be heard again on August 23.
Advocate Kavita points to the Aruna Shanbaug case, where the Mumbai nurse was in a vegetative state for 42 years from the day she was assaulted in 1973 until her death in 2015. "In the case of Aruna Shanbaug which first brought about a debate on passive euthanasia, there was no medical tests that could clearly establish that it was a case of Persistent Vegetative State (PVS)," says Kavita. "Now, in this case, we have filed for a child who is determined to be in a PVS," she points out. Persistent Vegetative State is a chronic state of brain dysfunction in which a person shows no signs of awareness.
When Paarvendhan did not cry after his birth, his parents were referred to a neurologist who confirmed that the child was suffering from Hypoxic Ischemic Encephalopathy (HIE). This means that while he was in a state of wakefulness, he had no awareness of himself or his environment. He completely lacks any motor abilities and must be placed in a stretched-out position continuously.
The advocate argues that no parents would want their child to die if there was some hope of betterment.
"If there was a chance of recovery, the parents would have definitely kept trying, taken help and ensure the necessary treatment is given," she says. "But here the damage to the brain has been proven to be irreversible. This compounded by the parents' financial status has brought them to court," she adds.
Thirumeni spends close to Rs 10,000 a month to meet the medical and dietary expenses of his son. He has two more girl children aged 13 and 14. In 2011, he suffered paralysis on his left side while he has since regained the use of his left hand and leg, he is unable to function to full capacity. He has a debt of over Rs 7 lakh incurred to provide medical treatment for the child.
"I manage to work about three hours a day. My wife has to be at home at all times because my son keeps suffering from epileptic attacks," he says. "Some days, he falls of the bed and on his face. He will bleed profusely and has lost teeth even. How can I as a father keep seeing this? Why should my son be in so much pain all the time and live an existence where he can't even express it?" he asks.
Thirumeni has visited hospitals across the country and met several neurologists to help his son but it was all in vain.
"He soils himself, can't eat and doesn't even know when to sleep," says the father. "He doesn't know who he is even. Seeing him like this is killing us by the minute."