Written by Cassandra Strunk

“There were some abnormal findings in your ultrasound that we’d like to discuss with you…” 

“…low insertion of umbilical cord, poor visibility of genitalia, and absence of urine filling the bladder.” 

“I want to refer you to an MFM clinic for further diagnosis.” 

These were the statements presented to us after our 20-week ultrasound. Like many people, my husband and I had never heard of Bladder Exstrophy, so the interpretation of these findings was completely foreign. As we waited for a second ultrasound appointment at a local children’s hospital, I admittingly did what you’re not supposed to do… I turned to Google. After hours of searching and typing in various word combinations that described our ultrasound findings, it led me to some free journals and a textbook on pathologies of the urinary system; in a free chapter of the textbook, I found the definition of “Bladder Exstrophy”. While my husband and I still had hope that everything could turn out “normal”, I’ll never forget the feeling in my gut when I found the definition of BE. That said, I had an odd sense of confidence, feeling that we needed to be prepared to hear that our son would be diagnosed with Bladder Exstrophy. I truly believe that finding the definition of BE prior to our next appointment and the “gut feeling” to be prepared was God’s hand at work– a testimony of God’s guidance to prepare us for what was to come. 

Navigating the Unknown

The second ultrasound found the same findings as the first, and with it came a confirmed diagnosis: Bladder Exstrophy. Not even a minute after receiving the diagnosis, we were pointed in a direction we never thought we’d ever have to navigate: the option to terminate the pregnancy. We were told, “We completely understand if this diagnosis is too much for you, and we support you if you decide to terminate the pregnancy.” Time felt like it stopped as I pondered many ways to answer this doctor, but I do remember my answer being terse, saying that termination was not an option for us. No patient education, no resources to learn about bladder exstrophy, and no referral to specialists were given to us. Instead, the support to terminate was brought up multiple times, speaking of the challenges and the “psychosocial” obstacles our son would face. Their medical staff set the tone–full of devastation and sadness–making me question that maybe there was something terribly wrong. Every medical professional we met kept repeating “I’m so sorry.” A nurse handed me tissues even though I wasn’t crying, and she even asked “do you feel him kicking” with a tone as if I shouldn’t be able to feel him. The answer was yes, I could feel him moving… a lot. My husband and I were instructed to sit next to each other so we could “comfort each other during this time,” when all we wanted to know was the next steps in my pregnancy care and birthing plan. It was only after I asked, “Can I still give birth to a healthy baby,” did their tone change to say, “Oh yes, you and your baby are otherwise completely healthy.”

It is no wonder that many parents are left with confusion and devastation when patient education is lacking and no resources are given to provide hope in knowing that the care to achieve a thriving and optimal life with BE does exist! At that moment, I knew we would be taking things into our own hands, and it was up to us to go out and learn about BE. Thankfully, after coming across the A-BE-C website, we were able to educate ourselves, self-advocate, self-refer ourselves to Seattle Children’s Hospital, and we never looked back. Xander was going to get a chance to receive the best care in the Pacific Northwest.

A Healthy, Strong Baby Boy

Fast forward to today, our baby Xander is one-year post-op complete bladder repair. Xander is our definition of “joy,” bringing smiles, light, and strength to everyone around him. His constant laughter and happiness make it seem like nothing in his life has ever caused him pain. That odd sense of confidence that overcame me as I was preparing for the diagnosis, became an overwhelming confidence once Xander was born; it is the confidence in knowing we were made for Xander and Xander for us. Psalm 139:14 resonates in our hearts; Xander deserves to live out his full purpose in this world. He blesses us each day as a growing, sweet boy, continuing to thrive and shine amidst his condition. We can’t wait to see what mighty things the future has in store for our strong baby boy. 

Like many of yours, our story is one of Acceptance of his diagnosis, Bravery in the face of the unknown, Empathy for one another, Courage instead of fear, and Faith in God’s plan.