By Camryn Young

Hello, my name is Camryn Young, I am 23 years old, and I was born with Bladder Exstrophy (BE). Being born with Bladder Exstrophy has granted me a handful of opportunities which I am beyond thankful for — but, to be honest, I did not always feel this way. Today, I am ready to share my story, and help to inspire others who may have or are currently experiencing the same journey I have.

To start from the beginning, I was born on May 24, 1999 in Staten Island, New York. When I was born, unfortunately, technology was not as advanced as it is today — nor were the doctors educated on what Bladder Exstrophy was — therefore, my family was not aware that I was going to be born with this rare medical condition. Unaware of these uncertainties, my mother had a very bad pregnancy, later to find out it was because my toxins were traveling through her body. When I was born, the doctors were perplexed, and unfamiliar with this condition. Because of this, I did not receive the proper treatment. The solution to this problem was a closure procedure. As this was not performed correctly, my bladder found its way back out, where I was then recommenced to Johns Hopkins Hospital in Baltimore, Maryland under the care of Dr. John P. Gearhart. 11 months later, on April 19, 2000, I then had my second reclosure. Due to the initial closure, which was done incorrectly, I was left with a constant leakage which resulted in me wearing diapers until a decision was met.

Within the 18 years between my second reclosure and my “big surgery”, I continued life normally. I went to school, I hung out with friends, I went on vacation, I was able to do everything a child growing up should be able to do — I just wore diapers throughout the journey. Growing up, my family and I decided to keep my medical condition private to prevent any potential judgement. Nobody knew except for my family and my teachers. It was not until I was in high school that I decided to share my medical condition with a close friend.

As previously mentioned, my medical condition did not impair me to participate in anything. I never was upset by my medical condition. The only times I found frustration in my condition was during the summertime, particularly, because of having to compromise on certain swimwear as I had to wear a Little Swimmer. These days were the most challenging, for both my parents and myself. These are days which I would question why I was born with this condition, and become very angry wishing my life had played out differently. Reflecting back on this time, it was understandable, but something I would not take back for the world because I now realize things could have been much worse.

Entering my second year of college, I decided it was time to start thinking about my “big surgery”. The reason no initiative have been previously taken is because both Dr. Gearhart and my parents decided when I was ready to “wear big girl underwear” I would let them know — and that is exactly what I did. Expressing this to my parents both shocked and overjoyed them since it had been 18 years since this topic was addressed. The topic was not addressed regularly for any particular reason, but my parents like many others, waited for their child to start the conversation first as this was a sensitive topic. Occasionally, my parents would question me about surgery options, but because I was so young and I was not bothered by my condition, discussion was brought up only during doctors appointments or moments of concern. A few months later, I went for an examination under anesthesia where the news of permanently catheterizing was given. At the time, I was very upset with this news, but now I could not be happier (I mean, I get to pee out of my bellybutton, how cool is that?). Three months later, I had my “big surgery”. I remember the morning of the surgery I was terrified. I was sitting in the pre-operation room with my parents and my sister crying because I was so nervous and I felt nobody understood the fear or anything I was experiencing throughout my entire life. At that moment, I was taken into the operating room and did not return for 18 hours. During those long 18 hours, my sister began thinking about what I had said. She then began researching Bladder Exstrophy support groups; that is when she found Courage to Shine. In searching the website, my sister came across a girl named Kylee. Kylee was also 20 years old and had Bladder Exstrophy. Upon emailing Courage to Shine and explaining the situation, she was put in contact with Kylee who then began calling me once a week to talk about all things Bladder Exstrophy, and even some things not related to Bladder Exstrophy. I knew from the moment we first spoke that we were going to be best friends.

During my time in the hospital I worked hard to recover, but minimal progress was made. The surgery was supposed to fix my constant leakage, and it did for a while, but then, I continued to leak. Confused why this would happen, I went for an x-ray. In receiving the results, it was seen that on my left side there was an additional ureter tucked behind my left kidney that the doctors had not seen during my surgery. Usually, a person is born with two ureters — only 15% of people are born with three, and I was one of them. This meant even though I could now catheterize through the Mitrofanofff in my bellybutton, I would still leak from below as the ureter is not tied off. Therefore, I still need to have one more surgery to correct this issue. So, at the moment, I catheterize every four hours, but still wear pads to control the leakage. Although I am not happy by this result, pads are definitely an upgrade from diapers.

The difference between attending college prior to my surgery versus post surgery has not really changed. The only difference was that now I was at a new school. Upon enrolling in my new college, I had to go to campus one day to create my schedule and learn more about the school. This day was only two months after my surgery. Luckily, my sister had just enrolled into the same school and was available in the event I needed help. This was one of the first times I would be catheterizing in a public restroom on my own; it was safe to say I was terrified. As expected, I had difficultly catheterizing, on my own account as I forgot to lubricate the catheter before inserting it into my Mitrofanofff. Aside from that incident, I never have had an issue since. When making my schedule, my sister and I had began to speak with one of the professors about Jewish Studies as she was the head of the department. Little did I know, enrolling in this woman’s class was one of the best decisions I had ever made as she was one of the largest influences in my college career moving forward. Not only did this woman guide me academically on multiple accounts, but she essentially became my “school mom”. I opened up to this woman about everything including my medical condition; not only was she accepting but consistently would worry if I was late to one of her classes, knowing I was probably in the bathroom. Nearing the end of my college career, we still continue to talk at least once a week, and see each other a few times over winter and summer vacation. In entering a new school in an unfamiliar place, it was nice to be welcomed with open arms and acceptance. This woman also guided me to enroll in the Learning Access Program at my college. The Learning Access Program allowed me to receive accommodations in my classes by using the restroom as needed with no penalty as this was a medical condition that could cause harm if not handled within a certain time frame. With this, I felt comfortable and safe at my school knowing I was surrounded by supportive individuals.

As for my academics, attending school was never an issue, and I used the restroom whenever necessary. In my backpack, I would keep a small bag with my medical supplies — hand sanitizer, catheters, non-scented baby wipes, and pads — that was very discreet. For precaution, I would also keep extra supplies in my car in the case of an emergency. I always find its better to have extra supplies as I was over an hour away from home. Moving further in my education, as an education major, I am required to complete clinical practice inside of an elementary classroom. For four semesters, two years, I was in an elementary school completing my degree. Prior to visiting the elementary school everyday, I would speak with the teacher and explain how I have a medical condition which requires me to use the restroom every four hours. All my teachers were understanding to the situation, and if they were not, my Learning Access Program advisor explained how she would provide documentation if needed (luckily, I never had this issue). For my last semester of college, which I am currently in, I need to complete 15 weeks of student teaching. This means every day, for an entire school day, I need to be inside of the classroom teaching. Personally, I have never found an issue with excusing myself to use the restroom as this is common for teachers to do throughout the school day. Overall, my medical condition does not prohibit me from attending school or pursuing my career goals. When you actually think about the situation, I just go to the bathroom differently than everyone else, so, why should that be a problem?

Four years later, I still have not gotten the surgery. It is not that I do not want to get the surgery, but the timing has just not been right. Within these four years many exciting things have happened in my life . Since then, I have returned to college to pursue my degree in education where I am working towards becoming an elementary school teacher. I have also been in a relationship for three of those four years, and I have received nothing but love and support from both my significant other and his parents. Lastly, I have formed relationships with those in the Bladder Exstrophy community. For the past year, Kylee and I have started a support group for people who are in a similar situation to myself — having nobody to talk to about their medical journey. Within these monthly meetings, we talk to individuals of all ages and parents about their personal and medical journey with exstrophy. There are many individuals in the group who have had surgery, and many who have not. With this, we solidify a safe space for conversation on any topic, and encourage others to join and share their experiences. While BE may have not been in my original plans, looking forward I cannot imagine my life without BE given the opportunities it has granted me just in four short years

You can contact Camryn at: camryn@courage-to-shine.org

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