This is our story about our journey with Bladder Extrophy. It is an extremely rare birth defect where about 6 weeks gestation the bladder forms on the outside of the baby's body. It greatly effects the growth of the genitals, hips and bladder area. Happens in about 1 in every 50,000 births and doctors have no idea why it happens. Thank you for visiting our site. I'm hoping this will give a central location for anyone interested to keep up with our story. And hopefully other families going through this will also find comfort in knowing they aren't alone. So our motto for our little guy is "you can't blend in when you were born to stand out". We know Yahuah has a big plan for him and our family of 8.