When two-year-old Shlok Desai brought in his second birthday on Sunday, his parents had a dual reason to smile. Diagnosed with a rare liver disease — Budd-Chiari Syndrome — little Shlok spent most part of the past one year in and out of hospitals. Doctors conducted an array of diagnostic tests and periodically drained fluid out of Sholk’s bloated stomach, before finally performing a complex and first-of-its-kind surgery, in September, to cure him.
“Budd-Chiari Syndrome is a rare problem seen in one in a lakh people. It results from blood clotting in the (hepatic) veins flowing out of the liver. The high pressure of blood in these veins results in symptoms like a bloated abdomen, enlarged liver, and accumulation of fluid in the abdomen,” said Dr Rajeev Redkar, a consultant paediatric surgeon, Lilavati Hospital. Redkar, who has successfully treated 17 patients for Budd-Chiari Syndrome, performed the surgery on Shlok with a team of experts.
Sholk’s father, Hiren Desai, 32, who is as a civil engineer said that he had never heard of the disease his son was suffering from. “Neither had local doctors in Vapi,” Hiren said. “It was just after his first birthday that we noticed his bulging stomach. We were warned that it was something serious and that is when we approached a specialist in Mumbai.”
In Mumbai, once sonography reports and other tests enabled paediatricians — Dr Bhupendra Awasthi and Dr Rashid Merchant — to diagnose the condition, the Desai’s tried to research the syndrome on the internet, but failed to receive much information.
“We were considering flying to Delhi, where we had heard the surgery is performed. However, just a day before our flight, we found out that the surgery could be done in Mumbai,” said Hiren.
While Shlok managed to receive timely treatment, several others are not so lucky. “Awareness is a problem in India. The knee jerk response to fluid in the abdomen is to treat the patient for tuberculous ascites,” Redkar said.
