Lack of awareness, fear stop parents from opting for beneficial paediatric epilepsy surgery

While curative surgeries for paediatric epilepsy patients have been around in Europe for over five decades, they are yet to be accepted as a solution by Indian parents

MUMBAI: With epilepsy affecting 0.8% of India’s paediatric and adolescent population, about one-third of whom have drug-resistant epilepsy, a timely curative surgery could prove life-changing. But while curative surgeries for paediatric epilepsy patients have been around in Europe for over five decades, they are yet to be accepted as a solution by Indian parents. Doctors say that part of the problem is the lack of awareness about the existence of such surgeries as well as apprehension about children undergoing brain surgery.

Lack of awareness, fear stop parents from opting for beneficial paediatric epilepsy surgery

“People aren’t even aware that patients can return home a few days after the surgery,” said Dr Saurav Samantray, paediatric neurosurgeon at Mumbai’s Narayana Health SRCC Children’s Hospital, which has a specialised epilepsy care programme for paediatrics and hopes to develop quaternary paediatric neurology subspecialties in India.

According to the 2014 ‘Annals of Indian Academy of Neurology’ report, about 10 million people in the country have been diagnosed with epilepsy, of whom 30% to 40 % or three million to four million have drug-resistant, complex, or severe cases of epilepsy. Globally, there are over 50 million diagnosed cases, with nearly five million added every year. According to the World Health Organisation, 80% of these are in low- and middle-income countries.

While these statistics are for adult epilepsy, the case of paediatric epilepsy is proportional. Narayana Health SRCC Children’s Hospital comes across 300 cases of pre-surgery evaluations for epilepsy annually. According to Dr Pradnya Gadgil, head of the complex paediatric epilepsy programme, over 175 surgeries have been conducted on patients in the past three years, 87% of whom were seizure-free following one year of follow-up treatment.

“Curative surgeries for epilepsy have been around in Europe for almost five decades,” said Dr Gadgil. “But although the technology and services are available here with an expert team of London-trained doctors, factors like lack of awareness and hesitation in undergoing brain surgeries have led to a wide gap of about 50% to 80% between those needing surgeries and those actually getting them.”

These corrective surgeries could be of various types: disconnecting the diseased part of the brain from the healthy brain, removing it altogether or making it dysfunctional using heat treatment such as radiofrequency thermocoagulation. While these surgeries may require multiple rounds of consultations with specialists from various disciplines, post-surgery recovery is quite quick, with patients being able to go home within a few days. Even after major brain surgery, children are conscious and able to eat and drink on the very evening of the surgery.

For parents like Bhavik and Cheryl Shah, whose 27-year-old data analyst son, Karan, managed his symptoms with medication for 20 years, the surgery has brought huge relief. There was a time when Karan would face a sustained 45 days of seizures, with attacks sometimes happening every 10 minutes. Today, the Shahs get uninterrupted peaceful sleep at night without having to worry about their son while Karan himself is looking forward to a healthy new life.

Doctors are now working to make epilepsy care part of the state health services system. “None of the Maharashtra government medical schemes support epilepsy surgical evaluations or surgery types (except one in the past) nor is medical insurance available for epilepsy,” said Dr Gadgil. “In fact, there are restrictions even on epileptic patients driving, thanks to some 1936 law that continues to be in force even today. We are trying to create awareness to address their concerns.”

Doctors urge parents to set aside awkwardness, have open conversations about epilepsy and seek specialised care, which is available in India.