By Priyanka Kallur Whenever someone asks me about my life, I never know quite what to say. For many years and even sometimes today, I don’t think of myself as anything but ordinary. However, I am reminded frequently by friends and family of how unique my life truly is. I was born in a small hospital in the suburban area of Bangalore, Karnataka, India on Shivarathri night, an important religious holiday, dedicated to the Hindu god Shiva. My life started off pretty much the same as any other baby. My mom went into labor two months early with me, and had me via cesarian section, something about amniotic fluid levels being too low. At the time of my birth doctors were prepared for a premature baby, but nobody was expecting me to be born with so many health conditions. At my birth, in addition to being premature (I was 4 pounds at birth), I was born with a rare condition called Cloacal Exstrophy/OEIS syndrome, something the doctors who delivered were not prepared to treat. Nobody up to that point had even detected my condition before, something that can be detected very early during ultrasound today. I needed multiple surgeries and a specialized incubator in a NICU, something that was not in the hospital I was born in. I also had a very high body pH at birth that they were struggling to get under control. Unable, to treat me in the small hospital, doctors told my family to take me to St. John’s hospital, at the time, one of the only specialty hospitals in the city. At barely hours old, I was loaded with my uncle into an autorickshaw, headed to St. John’s hospital, leaving my mother behind. At St. John’s hospital I was very much fortunate, that they had a pediatric surgeon who had seen my condition before and knew how to treat me. Despite having experience treating my condition, it was not an easy task. I was born with my bladder and colon connected and on the surface of my body with no skin. My pelvis was not joined together, no proper abdominal wall, and no vagina, urethra, or rectum. I also had spina bifida, sacral agenesis and mild scoliosis in my lumbar spine. It was a miracle that I survived that night, and I had multiple unsuccessful surgeries before they were able to properly stabilize me. I had to be operated on multiple times in just the first few days of my life.
Month: March 2023
B.E.S.T. CAMPOUT – South Lake Tahoe at Tahoe Valley Campground – Friday July 28 – Monday July 30, 2023
WE’RE BACK! And excited to announce the B.E.S.T. CAMPOUT in 2023! What: The B.E.S.T. Campout in 2023 will now be held over 3 Nights! When: FRIDAY, July 28th – MONDAY, July 31st Where: South Lake Tahoe at Tahoe Valley Campground (Do not call the campground to book your site(s). You will book directly through B.E.S.T.) Cost: (See pricing…
2023 Great Lakes Chapter 14th Annual Summer Campout
July 28 – July 30, 2023 You are invited to join us for a weekend campout for anyone with bladder exstrophy, cloacal exstrophy, cloaca, epispadias and hypospadias, and their families and friends. This is a great way to connect with other families, share in similar experiences and know that you are not alone! To view some videos…
Ostomy Canada Youth Camp – Camp Horizon, Bragg Creek, Alberta, Canada – July 2 – July 7, 2023
More info can be found on Ostomy Canada Youth Camp Website:
2023 International Exstrophy Conference – Seattle, WA, USA – Friday July 21-Saturday July 22, 2023
More info will be posted very soon at Association for the Bladder Exstrophy Community Website Welcome Party & Registration Friday, July 21 | 6:00-8:30PM Washington Athletic Club1325 Sixth AvenueSeattle, WA 98101 Details TBD Conference Sessions Saturday, July 22 | 7:00AM – 5:00PM Washington Athletic Club Details TBD Cost Individual: $55 ($50 before April 30th) Families:…