Just like any other eight year old
Frankly speaking, you don't know what to expect till it is in front of your eyes. Going to meet an eight-years-old kid dealing with epilepsy, even after many 'such stories' may not spike one's curiosity initially. But the moment you get to see the child's somewhat toothless grin...something pops up in your brain afresh - the feeling of hope and the story of survival.
"At (the age of) four, shaking started in the legs, spread to the whole body. It used to happen at regular intervals," Sanjay Singhal recounts on camera. His somewhat shy wife fills me with more from behind the curtain. Kanika was just a child. Normal. Never had they imagined that their lil' princess could land up with 'fits'.
Epilepsy is, simply put, a brain disorder in which a person has repeated seizures over time. It occurs because of some permanent changes in the brain tissue and it can cause the brain to be too excitable or jumpy. The brain sends out abnormal signals. This results in repeated, unpredictable seizures. Epilepsy may be due to a medical condition, an injury that affects the brain or the cause may be unknown.
Kanika's parents consulted doctors of course - many of them. But it didn't help. When medicines didn't help lil' Kanika get better, they switched to faith. And babajis. They tried their best. But still, nothing helped. Three years after running pillar to post, they brought Kanika to AIIMS, where doctors suggested a rare form of surgery that would switch off a part of her brain.
Kanika's parents weren't convinced but. Like most parents, they wanted to avoid surgery at any cost. They waited for months. And that cost them. Kanika's seizures travelled up to all the left side of the body. Finally, they listened to the doctors' advice and Kanika underwent a brain surgery called Hemispherectomy.
Something, that a couple of years later, caught my interest as a medical correspondent. And led me to meet Kanika and her family.
What's the big deal about another brain surgery? Because, as I was told, it literally "SWITCHES OFF" half your brain. "And you still get to lead a normal life..." the doctor told me on phone. Of course, I had to do a story on it.
"What the surgery does is that it disconnects the harmful part of the brain from the rest of the brain. Rest of the brain takes over the function of this part," explained Dr Manjari Tripathi, neurologist at AIIMS, who pioneered this surgery. "Once disconnected, these parts of the brain stop functioning, so the seizures stop as well."
Hemispherectomy is effective for 30 per cent of epileptic patients who do not get better with medical therapy. To simplify, it could help kids like Kanika lead a normal life, who would otherwise suffer from epilepsy lifelong. That would have meant no school, not being able to play with other kids, not being able to take care of oneself at home, not be able to drive, not be able to even cross a road by oneself, be on medication forever and after all that be 'at risk' of a seizure anytime, lifelong.
The surgery, if done at the right time, reverses almost all these situations.
Sanjeev tells me that he regrets not acting on time. "Main sab parents se request karta hun ke plz baba ke chakkoron mein apne time mat waste kijiye..." The sooner treatment begins, the better.
Dr Tripathi also clarifies that it is not meant for all those who suffer from epilepsy. Around 10 million Indians people from this disorder and we add five lakh new cases of epilepsy in children every year. This surgery could help 30 per cent of them - that is a lakh and fifty thousand of these children, who do not respond well to medication, could hope for a normal life.
Also, "It should not be done for epilepsies which come from a very small part of the brain. It should be done only on larger parts," says Dr Tripathi. There are some side effects after the surgery, like weakness in the hand, but doctors assure that the benefits far outweigh the risks. For e.g. Kanika has not had a seizure since the surgery.
And so when I meet this little one, all I find is a toothless grin when I praise her drawings or nudge her to sing me her favourite song...or find her getting irritated and moody when her parents insist she does a nice thing for the camera. And throwing tantrums. And has to be lured with an ice cream before we get her out to the park for a shoot. Just like any other eight year old.
More about ShaliniWas the kid lost in science books at school, practically lived in the science labs at high school but that love affair diverted to mass media studies during graduation. When you have a combination like that, there plops a health journalist. And after 6 years of work now, she still feels she hasn't talked enough about YOUR health - all that you want to know & need to know on pandemics, major public health concerns (tobacco products must be banned!), new miracle medicines & treatments on the horizon to drugs that should banned here & now…And more importantly, about the people behind these stories. The real reasons, real inspirations. Constantly complains that not everything can be said in a minute & a half. Hence this blog – takes you behind the scenes, beyond the bytes. She loves to cook a good story but once off the screen, can’t cook a thing in the kitchen to save her life. Finds it equally impossible to keep a cupboard/desktop tidy. Is a known bookworm, blog-worm (if that’s a word) & a chai freak!
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