After the news of Microsoft CEO Satya Nadella’s son’s demise, numerous articles appeared on how Nadella prioritized spending time with his son over everything.
Zain Nadella, who was born with Cerebral Palsy (CP), died on Tuesday at the age of 26. Many in their posts, harked back to an October 2017 post that the Microsoft CEO had written titled The moment that forever changed our lives. He wrote evocatively about his experiences as a father and how it altered his life forever.
However, in India, Cerebral Palsy remains a largely unknown disease. CP is caused by damage in the brain at the time of birth. It leads to abnormal development due to lack of oxygen in the brain. It affects a person’s ability to control his or her muscles. In the larger public discourse, its inclusion came through popular films, most notably Zero and Margarita With A Straw. Many experts believe this is not enough as parents in India are forced to encounter ignorance and bias.
“This disease is more prevalent in rural areas than urban because the deliveries in cities are usually supervised in hospitals,” says Dr. Madhukar Bhardwaj, Sr consultant, neurology, Aakash Healthcare, Dwarka. “Cerebral palsy caused by a shortage of oxygen during the delivery is almost non-existent in urban environments. Due to a lack of modern facilities, births in remote locations can sometimes be bungled, resulting in severe Cerebral Palsy in the newborn kid,” he explains.
“It is very common in India. Almost, occurring at five to three cases per thousand life births. You have to understand that this is a very tough situation for parents. They have welcomed a child with dreams,” says Dr Praveen Gupta, principal director and head, Department of Neurology at Fortis Memorial Institute, Gurugram.
“For a normal family, this is very hard. They have to spend a large amount of time and resources in physiotherapy, cognitive rehabilitation,” he adds.
Bhardwaj stress on the fact that the situation is very dire, even in cities. It is not merely about lack of awareness, but also about the deficiency of specialists.
“The efforts to create awareness are minimal. We have qualified doctors, but no centres or specialists to assist these children or their parents. There is very little access,” he says, explaining the severity by juxtaposing the access that those in the urban have with those from rural India.
“There is certainly an impact on the mental health of parents,” he says, before adding, “Many doctors even refuse to see such cases and say ‘nothing can be done’. There have to be agencies which undertake a comprehensive integrated effort to rehabilitate a child with cerebral palsy into normal life. The need is to create comprehensive centres which combine medical therapy assessment with interventions like botox and rigorous physiotherapy,” concludes Gupta, adding that rehabilitation will lead to substantial progress.
