Embracing Bladder Exstrophy

By Jessica Sanchez

My name is Jessica Sanchez.  I am 26 years old, born and raised in Washington State and I was born with classic bladder exstrophy.  But bladder exstrophy is not who I am, it’s just a part of me.  I am a daughter, a sister, a mother, a wife, a teacher, and a Christian.   I love to dance, lead worship at my church, have family game nights, and watch my daughter grow. My experiences with bladder exstrophy have been both hard and rewarding.  What may have seemed like a hardship at the beginning of my life; turned into a beautiful journey that I wouldn’t change for the world.

On March 30^th, 1990 my parents welcomed their 1^st child into the world; a 7 pound 10 ounces baby girl.  Shortly after the delivery, the nurses took their little girl away to examine her.  After much confusion and a considerable amount of time, the doctor walked into their room with a textbook and said “I think this is what your daughter has.”  The doctor gave my parents the choice to have me flown to Seattle or Spokane.  Because we had more family in the Seattle area, my parents chose Seattle.  I will forever be grateful for that decision.  I was then flown to Seattle Children’s Hospital where world renowned surgeon, Dr. Michael Mitchell, became my doctor and did my initial closure at only 1 day old.  My mother was not able to fly with me to Seattle due to an intense labor/delivery so my grandmother flew with me.  Now that I am a mother, I can’t even image the emotions my mother and father were experiencing.

Growing up with bladder exstrophy definitely had some moments that were easier than others.  I had 3 major surgeries and 5 minor ones all before I was 12 years old.  Although the surgeries were hard, wearing tubes for weeks after surgeries wasn’t fun, and having to always be aware of the nearest bathroom was tedious, my parents never treated me as though I was different from any other child.  They gave me the mindset that I could do anything I put my mind to and to not let bladder exstrophy hold me back.  My younger brothers and I were treated the same, I just had to go to the bathroom more and have more doctor appointments. In elementary school I only told a few close friends about my bladder because I had to wear pull-ups at night.  I still had lots of sleepovers and had friends over a lot. The more confident I became with myself, the more open I was about my exstrophy.  My mom was asked to write a few articles about her experience as a mother with an exstrophy child over the years.  She even contributed to the Living with Bladder Exstrophy book written in 1996. My story was also in an article in Connections magazine, a Children’s Hospital magazine, in the summer of 2003. Having this birth defect became something positive in my life, not a burden.

When I was a year old my family became a part of the NW Exstrophy Support Group through Seattle Children’s Hospital.  This support group got together once a year for a camping trip and also planned fun activities during exstrophy conferences.  As the years went on, my mom became very involved in the support group and helped lead it throughout my childhood.  During these support group events, I got to meet and build relationships with multiple people who could relate to what I was going though.  Even though all our experiences were different, it was comforting knowing people with the same condition. It was always fun to share stories and compare our man made belly buttons or lack of a belly button. While I was young, I got to look up to older women with exstrophy and when I became older; I became someone younger girls could look up to. I have so many fond memories of those summer campouts and still keep in contact with a lot of people in the support group.

Thanks to the power of prayer and my amazing doctor, I never had to use a catheter and have been able to empty my bladder on my own.  By the age of 16 my bladder had grown to an average size (thanks to all those Kegels) and my bladder neck had become stronger.   I was told I wouldn’t need to worry about my bladder until I was pregnant and only then we would need to monitor it and I’d need a C-section.  Throughout my childhood, I was very active in my church and I was devoted to dance.  When I was a teen, I had the opportunity to speak at 2 different conferences honoring Dr. Mitchell.  It was such a privilege to be able to share my story and help honor a man who has devoted so much time to my life and the lives of exstrophy children around the world.  To this day, I still keep in touch with him.

I married my husband Philip in October 2012 after dating for 5 years.  I was very fortunate to find a man who has been so patient and understanding with me and my medical issues.  Throughout our relationship, he has never lost faith that my medical history would prevent us from having the life we’ve dreamed of.  In October of 2014 we got the exciting news that we were expecting our 1^st child! I was able to have a somewhat normal pregnancy which was one of the best experiences of my life! However, it was very nerve-wracking not knowing what to expect when it came to her delivery.  Two weeks before my due date, I went into labor and started dilating naturally.  Due to the amount of scar tissue I had from my surgeries, my doctors didn’t want me to dilate all the way because they were afraid I would begin to tear the further along I got into labor. So that night I had a C-section.  In the OR we had my urologist on standby in case something went wrong during the procedure.  We welcomed our beautiful little girl, Adalynn Rae, into the world on May 30^th, 2015.  Thankfully the surgery was very successful! Since my body had naturally gone into labor, my bladder was completely out of the surgeon’s way and they were able to deliver her without affecting my bladder! Adalynn has been such a blessing in our life and we hope the Lord will continue to let our family grow in the future.

When I was first asked to write my story, I felt like my story wasn’t eventful enough.  I haven’t had 30+ surgeries and I haven’t had to use a catheter; but then I thought about all the new mothers and fathers who would be reading this, scared and unaware of what their child’s life would be like.  I want to let you know, your child will be just fine! Your child is beautiful, smart, and can do whatever he/she puts their mind to! Encourage your child through the hard times.  Celebrate with them during the good times. Love them unconditionally!  They will be able to live that life you dreamed they’d have while you were anxiously awaiting their arrival into this world.  Embrace this birth defect as a blessing because soon enough they will be the ones sharing their stories and touching many lives.

© 2016 Jessica Sanchez & Courage to Shine™

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

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