Boy gets new lease of life, thanks to a kind doctor and UK angel

From seeing the world upside down to sitting upright for the very first time, life has changed drastically for 13-year-old Mahendra Ahirwar. Born with congenital myopathy, a condition that caused his head and neck to hang sideways, in February this year, Mahendra’s became the first case in India to treat such a deformity. All thanks to a spinal surgeon in Apollo Hospital, New Delhi, and a woman from Liverpool, UK.

“What I found was a nonsense or missense mutation,” Dr Rajagopal Krishnan, an orthopaedic surgeon with 15 years of work with the UK’s National Health Service (NHS), told dna. “There are probably only 200 cases worldwide.”

“Today, he sat up straight for the first time,” said Mahendra’s father Mukesh Ahirwar, talking to dna over the phone from, his village of Chati Pahadi, Chattarpur district, Madhya Pradesh. “The doctor says the bone has started to fuse. Three months after surgery, we felt we made a good decision.” Else, he and his wife Sumitra were so scared they tried dissuading their son when he was being taken to the operation theatre. “He was so weak we felt he would die. We told him to not get the operation done,” said Mukesh. But Mahendra, he recounted, told his parents he wanted to get this done even if it killed him on the table.

“He was very thin,” said Krishnan, “so much that there was no fat or muscle on him, only skin.”

The surgery, that lasted six hours, was rife with complications; the biggest being risk of death from malignant hyperthermia -- a fast rise in body temperature and severe muscle contractions -- from general anesthesia.

Planning, getting good anesthetics and pediatricians, on board took long. He said that it was difficult to get a proper diagnosis of Mahendra’s condition, when he first encountered the boy in November 2015, as there are many different kinds of myopathy. On the table, Krishnan could not use the more common ‘Lincoln highway’ approach to making an incision as that might have fixed the C1 and C2 vertebrae but would have certainly killed Mahendra.

Rejected by doctors for 12 years, Mahendra’s condition made news in some UK papers, where Krishnan’s wife spotted it, and asked her husband to take a look. Another struck by the news was Julie Jones, a resident of Liverpool who decided to do something about it. She ended up raising £12,000 through crowdfunding for the Ahirwars. This, and being treated pro-bono by Krishnan, took care of Mahendra’s entire treatment, which included being in Krishnan’s care from November till February 2016, and the medicines and wheelchair he is using till date.

Before the surgery, Mahendra was a depressed boy, say both Krishnan and Mukesh, who did not smile, did not talk. After the surgery, Krishnan said, he saw the boy smile and laugh more.

“He has told us that Mahendra should keep laughing,” added Mukesh, “he has ten friends now.” His older sister teaches him as Mahendra, though now equipped with an electric wheelchair and in a brace, still cannot go to school.

Though the family is a much happier one, and Mukesh and Sumitra no longer wish for all of them to die, they continue to be social outcasts.

“The children are friends but villagers think I’ve become a big man whose son has been given a lot of money. They don’t like this,” said Mukesh. “Earlier, too they wouldn’t even look at us because of Mahendra’s condition. Not one person from my village helped me.”

Julie Jones, Krishnan and the financial help they’ve given was godsent said Mukesh, as it was beyond his capacity to go to Delhi for help. A daily labourer, who studied only four years in school, and can write only his name, Mukesh made sure to send his children to school, even if the long works hours needed to earn that money almost made him sick. His wife, who is illiterate, cannot work as she spends all her hours with Mahendra. “He will die without her,” said Mukesh.

More procedures might be required. However, unlike other striken children who die young, Krishnan said,“the myopathy hasn’t spread to his heart, he should live till 50.”