Mumbai: Teen with rare disorder goes home after 3 months

MUMBAI: Dahanu resident Ashmita Pagdhare has a long list of worries. Some date back to 18 years, when her newborn son was diagnosed with several congenital abnormalities that needed a series of operations, while some are recent.
Two years back, as Covid-19 struck, her husband, a fisherman, suffered a stroke that paralysed his left side and, even as her family was struggling to make the ends meet, her 18-year-old son developed weakness in his hands and legs that over the next few days left him paralyzed.
But on Friday, the mother of three couldn’t stop smiling. Her youngest, Dhaneshwar, who had spent most of the last 90 days attached to a ventilator in Lilavati Hospital, Bandra, due to a rare disorder, the Guillain-Barre Syndrome, was not only well enough for discharge but the bill—almost Rs 21 lakh—was waived. “Dhaneswar has been our patient for years and we wanted to nurse him back to health,’’ said hospital COO Dr Ravi Shankar.
Dhaneshwar, who was born at home, first visited doctors when he was two days old due to high fever. “That is when we were told that he didn’t have the anal opening and needed urgent operation,’’ recalled Ashmita Pagdhare. He was 21 days old when doctors at BMC-run KEM Hospital corrected the anomaly.
A few years later, the Pagdhares were referred to pediatric surgeon Dr Suresh Karmarkar from Lilavati Hospital for problems with his urinary system. “He had urinary and stool incontinence, so we performed a surgery to fix it and thought that would be last time Dhaneshwar needed hospitalization,’’ said Dr Karmarkar.
But in the last week of October 2021, Ashmita Pagdhare noticed that Dhaneshwar couldn’t move his hands and legs. He was rushed to a hospital in Silvasa which is closer to Dahanu than Mumbai. He improved a few days later but while walking out on being discharged he collapsed and was re-admitted to the same hospital.
“That is when the doctors told us that he should be taken to Mumbai for treatment,’’ said his elder brother Yogendra. The family then called Dr Karmarkar.
Pediatric intensivist Dr Manish Arya said, “On arrival, the patient was in a bad condition, having paralysis of all four limbs, not able to speak or eat and severe muscle wasting.’’ His weight was down to 20kg. On taking history of the patient, he suspected Guillian-Barre Syndrome. “He was put on a ventilator and given special injections called immunoglobulins and fed through a nasogastric tube for two months,’’ said Dr Arya.
GBS usually follows a viral infection, and doctors initially thought that Covid-19 could have triggered Dhaneshwar’s GBS. “However, he didn’t have Covid when he got admitted. Also, he didn’t have antibodies for Covid-19, ruling it out as the cause,’’ said the doctors.
Dr Sangeeta Rawat, senior neurologist and dean of BMC-run KEM Hospital, Parel, said her department gets three to four GBS cases a month. “If the patient has respiratory problems and needs ventilator then the treatment is prolonged and expensive,’’ she said.
While Dhaneshwar, who is not able to speak clearly yet due to the tracheaostomy (opening of the airway) to connect to the ventilator, the Pagdhares are happy he is able to move his hands fully.
“My elder son has started going for fishing, but it hasn’t been economically easy for us. Dhaneshwar’s recovery is the only good news,’’ said Ashmita Pagdhare.