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.

When it came to taking me home doctors weren’t ready to send me yet. They told my family to let me stay longer in the hospital, but they didn’t have the money to keep me there, so at a month old I went back home. Doctors told my family that it would be difficult to care for a child like me without specialized care, but they were willing to give my family a chance. For the first couple of weeks, things seemed to be going okay, but I was small and struggled to feed, and my grandmother was not familiar with how to mix baby formula. I ended up with a bowel obstruction and severe dehydration and had to be rushed back to the hospital. That night as I was rushed in the doctor was just walking out of the clinic, I happened to get there just on time. I nearly died that night, if I hadn’t gotten there on time, I wouldn’t be here today. After that incident, I thankfully didn’t have any more serious emergency health situations and soon started to grow like a normal baby. There was always the question however, whether I would be able to live a normal life, and this was something that doctors in India didn’t have the answer to.

At the age of one, my life began to change for the better. My family had gotten into contact with Dr. Alberto Pena, a pediatric colorectal surgeon who was one of the experts at treating my condition at the time. He was currently working at the time at Long Island Jewish hospital in New York City and was willing to evaluate me and do some of my surgeries for free. This, prompted my mother to travel with me to the New York City, leaving India behind with the hope of getting proper treatment for me. Dr. Pena not only evaluated me but did a lot of my major surgical repairs almost immediately after my arrival there. I am forever thankful to him and the work his team put into helping me live a normal life. At the age of 2, I had my longest surgery to date, almost 22 hours. After all the initial surgeries and evaluations, the doctor told my parents that I would need surgeries throughout my life and many of the upcoming procedures would involve many weeks of recovery. My parents then decided it was best to stay in the United States, rather than taking me back to India, and with that I became a permanent United States resident. It has been almost 24 years since I moved to the USA, and honestly, I am so glad at where life has taken me thus far.

Despite all the numerous surgeries, checkups, and hospital procedures, I lived a relatively normal life, exceeding all the doctor’s expectations for me. I grew up as your typical, Indian immigrant and New Jersey school kid, going on fieldtrips to the shore, participating in field day, taking a giant yellow school bus to school every day. I had two parents, a younger brother, and friends that I would hang out with many times after school. Life wasn’t always easy, and I certainly had a lot of differences with my peers, but I rarely let that bother me.

My parents never treated me any different than any other child, they always held high expectations for me. I grew up believing that I could do anything I wanted to, and I was never given any leniency, so I studied hard, pulled good grades, went on overnight camp trips, played sports, participated in school field day, pretty much not too different from most kids. I always had on and off health issues, and had chronic pain that I dealt with daily, but I was strangely oblivious to all of it.  I remember feeling lonely at times though, because at the time I didn’t know anybody with my condition, and when I was younger, I thought I was the only one. This changed when I turned 15 and learned about Youth Rally, a camp where I finally met kids with the same/similar conditions to me. Going to Youth Rally changed my life for the better, and I suddenly felt like I was not alone anymore, and I met tons of amazing people there that I am still friends with today.

I never saw my life as limited, even though I knew that there were things I could never do, like becoming a professional gymnast. I honestly think that most limits are self-imposed.  It hasn’t always been easy and there were times I worried about my future. In a way I think this is what makes me resilient, I don’t ever listen to people who tell me no, I always try to find a way around things. When I was 16, I got the opportunity to have my bladder repaired, and I remember this being the procedure that really changed my life around. I would never have to wear a diaper again, and even though I would have to use a catheter for the rest of my life, I could go away to college like everyone else, something I wanted to do. The doctors at Robert Wood Johnson hospital were amazing and despite initial hiccups, I finally had a new body to face the world with. A few months after my bladder surgery, I started college at the age of 16 almost 17, in an early college program called Bard College at Simons Rock. I always knew that I wanted to be a physician and I was motivated to get started at early as possible. I got my associate degree at the age of 19, and then transferred to Virginia Commonwealth University and got my bachelor’s degree. Then in 2020, I got my masters in biomedical science from Geisinger Commonwealth School of medicine.

Traveling all over the country for school, rather than staying home really allowed me to develop my independence at an early age, as well as meet people from all over the east coast. After a two-year gap year, in which I got more medical experience and started my own tutoring business and my own online blog, I got accepted in 2022 to New York College of Podiatric Medicine. I am currently finishing up my first year of podiatric medical school, with the hopes to become a podiatric surgeon, who can literally get people back on their feet. I still have many years to go in my life and educational journey, but I always remember to give my utmost love and gratitude to people who have helped me along the way. I hope to not only become one of the best podiatrists in the country, but also a motivational speaker, so I can share my story with others going through a difficult time. I look forward to seeing where life will take me in the next couple of years, thank you to all who are reading my story!

You can reach Priyanka by email at: priyanka@courage-to-shine.org

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