JESSICA SANCHEZ – 2023 COURAGE TO SHINE™ Lisha Martinez & Adam Young Award Recipient

Note: Previous article: Jessica Sanchez – Embracing Bladder Exstrophy from 2016

By Jessica Sanchez

My name is Jessica Sanchez. You may recognize me from the Courage to Shine article I wrote back in 2016. I am currently 33 years old and still reside in Washington State. Born with classic bladder exstrophy, I have strived to live a life where this birth defect does not define me, it’s just a part of my story.  If you were to ask anyone close to me who I am they would tell you I am a wife, mother, sister daughter, worship leader, administrator, friend, and a woman of faith. Life with bladder exstrophy hasn’t always been easy but in my case, I truly believe I’m one of the lucky ones.  The unknown my parents experienced the night I was born ended up resulting in a journey I wouldn’t change for the world. 

On March 30^th, 1990, my parents, Alan and Sherrie Croshaw welcomed their 1^st child into the world; a 7 pound, 10 ounces little girl.  Shortly after the delivery while the nurses were examining all my fingers and toes, my parents began noticing there was some confusion. After a considerable amount of time, the doctor walked into the room with a textbook and said, “I think this is what your daughter has.” After informing my parents that I needed to be flown to a larger hospital they were given the choice of Spokane or Seattle.  The start of my luck with bladder exstrophy began the moment they chose Seattle.  I will forever be grateful for that decision because it meant that I was going to Seattle Children’s Hospital and was now a patient of Dr. Michael Mitchell, a world-renowned pediatric urologist.

Growing up with bladder exstrophy had some moments that were easier than others.  I had 3 major surgeries and 5 minor ones between the ages 0-12.  Although the stress of surgery was hard and managing tubes sticking out of me for weeks after wasn’t easy, my parents never amplified these experiences in a negative light.  I’m sure having a heighten awareness of every bathroom wherever we went and needing to make frequent bathroom stops was tedious, but I was never shamed or made to feel like it was an inconvenience.  I know my experience isn’t always a shared one and I’m so very thankful for my parents.  They taught me a positive, growth mindset which instilled in me the belief that I could anything I put my mind to and to not let my birth defect define me. They instilled this belief into my brothers as well and all three of us were treated equitably.  I had to use the bathroom consistently where my brothers had bladders of steal. I had to go to more doctor appointments but that allowed my brothers the chance to travel more and spend more time with extended family.

When it came to my openness about exstrophy, my willingness to share slowly developed as my self-confidence and self- identity grew. In elementary school only a few of my close friend knew and were my safe place. My bladder leaked at night so I wore pullups so those close friends became the ones I would have sleepovers with. By the time I was in high school, I was much more open about having bladder exstrophy.  I have always been very active in my church and devoted to dance. Both environments became a platform to share my story and grow in my own confidence. When I was a teen, I had the opportunity to speak at 2 different conferences honoring Dr. Mitchell and sharing my story. Now it is a part of me I am very proud of!

A huge part of my childhood was with the NW Exstrophy Support Group out of Seattle’s Children’s Hospital. My parents joined when I was one year old. This support group got together once a year for an annual camping trip and planned fun activities during the Exstrophy Conferences.  As I grew older, my mom became very involved in the support group and helped lead it.  During these support group events, I got to meet and build relationships with multiple people who could relate to what I was going through. I still keep in touch with some of them to this day! Even though each person’s experience is unique, it was comforting knowing people with the same condition. It was so fun sharing stories and comparing our man-made belly buttons or lack of a belly button.  I grew up seeing the older women with exstrophy as role models and when I got older, I became that to girls as well. I have so many fond memories of those summers. 

I have been very fortunate in my journey with exstrophy and have never had to use a catheter to go the bathroom. Thanks to Dr. Mitchell and the power of prayer, I have always been able to pee on my own. By the age of 16, my bladder had grown to an average size and my bladder neck became strong. Bladder checkups became few and far between and something I knew I wouldn’t have to worry about until I became pregnant. 

I married my husband Philip in 2012 and in October of 2014 we found out we were expecting our first child. We got pregnant after 2 months of trying which I have heard is common in exstrophy patience because the vaginal canal is often shorter than average.  My first pregnancy was smooth and with the advice of my doctors I planned to deliver my daughter, Adalynn via c-section. For her delivery, I had naturally gone into labor 3 weeks early. I delivered her in a regular OR with a spinal and an epidural in case something went wrong because my doctors did not know what to expect. I have had two anesthesiologists in the room. Her delivery was smooth and so was my recovery. She is my mini me! When Adalynn was a year and a half, we found out we were expecting again. This time it was a boy. When I was 36 weeks, I slipped and fell on a patch of ice which landed us in the hospital to make sure everything was okay. Just as they were about to send us home his heart rate dropped two low for too long. This led to an emergency c-section that was quite different than the first. Avery was safely delivered but the doctor let me know how luck I was. My uterine line was about to rupture, my placenta was too small, there was a knot in the umbilical cord, and he had pooped in the womb. Both my children are miracles, and his birth intensified the miracle part. During first few days after his birth the doctors thought he may have to have two different surgeries before he turned one.  Those days were the first time I got a true glimpse of what my parents felt right after my birth. Avery ended up not need those two surgeries, but it was helpful knowing I had been through some at a young age. It helped relieve some of the anxiety around the idea of surgery. As I have continued into adulthood, I’ve discovered more and more women with exstrophy who have had children, each of us with our own birth stories and experiences. So, if you’re wondering if it’s possible, it is!

My children are now in elementary school and keep me as busy as ever. They are getting to the age now that they can begin really learning about this part of my life which has been fun to share with them. Even as I am writing this, Adalynn has been reading my words and asking questions. Living with bladder exstrophy is just one piece of me. It has led to experiences that have shaped me, opened the door to relationships with people around the globe, and allowed my personal experience to be a beacon of hope to so many whose loved ones have exstrophy too. If you are reading this and you are just beginning to understand all the ends and outs of bladder exstrophy, know that its all okay. We have hundreds of doctors taking the time to improve each surgical option. Try to not let fear take over. Yes, surgery at any moment and any age is scary but it is just a small part of the story. Take the trips, join a support group, but most importantly love your child for who they are and take in all the precious little moments.

© 2023 Jessica Sanchez & Courage to Shine™

To contact Jessica you can do so by emailing her at jessica@courage-to-shine.org

Previous article: Jessica Sanchez – Embracing Bladder Exstrophy from 2016

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