“Aai, why are you worried, I am going to be fine,” are the words which are repeated by a witty, smart and cheerful child named Pratham Ganesh Kedar to his mother, Sarika.
For the past 11 years, Pratham Kedar hasn’t passed urine at all. As odd as his condition may sound, the eleven-year-old son of a BEST driver, Ganesh Kedar has been suffering from a very rare condition.
The condition, known as bladder exstrophy is uncommon. It is a rare and complex birth defect which involves the urinary and reproductive systems along with the intestinal tracts, which also include the musculoskeletal system.
In this condition, the bladder grows inside-out, marking the inability of the body to urinate.
“There is no paediatrician in Mumbai whom we haven’t visited. The second surgery which was done in August, has enabled him to urinate and the doctor has assured that the capacity of the bladder shall also increase with time,” said Sarika.
There is an unexplained hope with which Sarika said, “I am waiting for the day when he will be perfectly fine and will lead a life like you and me.”
Currently, the Pratham is undergoing treatment at the Kokilaben Dhirubhai Ambani Hospital and will be reassessed by the end of this month for further treatment.
Dr. Sanjay Pandey, Consultant – Urology, Gender reassignment & Renal Transplantation at Kokilaben Dhirubhai Ambani hospital who operated Pratham in the month of August said, “Pratham cameto me with the condition of exstrophy and epispadia. In bladder exstrophy, the urinary bladder is not formed fully by birth. This in turn means that the capacity to store urine is as low as 50-100ml, as compared to the usual capacity which is 400-600ml.”
He added, “In epispadia, the penis is open or uncovered. In Pratham’s case, we have made a urinary bladder using his intestines. This means his control mechanism has been improved and storage capacity is also expanded. In my practice of 20 years, I have seen about 30-35 patients with this condition, so that is how prevalent it is.”
“The recent operation was done in August. The medications and other expenses cost us nearly 7 lakh rupees,” said a teary-eyed Sarika.