Imagine being told during a routine 18-week ultrasound scan that your baby boy is missing parts of his brain. This news was earth shattering and utterly devastating for our family. We are Luke and Riana (Czapla) Pryor, parents of three wonderful kids (Evelyn [6], Cora [4], and Sam [2]), and faculty at the University at Buffalo in Buffalo, NY.
We later learned our baby boy was not missing parts of his brain, but rather has a birth defect called Spina Bifida whereby the spinal cord fails to properly develop which also alters the shape of the brain. Surgery is needed to repair the portion of the spine that never fully closed during development. Learning this made our hearts hurt for our baby boy and we immediately began searching for who could best perform this life altering surgery to help our little one.
Pediatric neurosurgeons at Children’s Hospital of Philadelphia (CHOP) have pioneered a new fetal surgery that repairs the opening in his back before he is born. Yes, you read that right, before he is born! Amazingly, they open Riana up, open the womb, get a sneak peek at baby boy, and repair the opening in his spine before closing them both back up. When he is delivered later this summer, it will be as if he was twice born! We hope this surgery will preserve brain and leg function for baby boy Pryor giving him the best chance at a quality of life we all hope for our children.
Four days after learning we were candidates for this surgery, we packed our bags and drove 6 1/2 hours to Philly for the surgery. We are required to remain here while Riana and our son recover throughout the remaining 14 weeks of the pregnancy and the 2-week NICU stay after birth.
We are excited for baby Pryor to join our other little ones, but it’s going to be a rocky road. Here’s the catch – while we are thankful the Ronald McDonald house graciously allows us to stay with them during this difficult time, pandemic restrictions do not allow Evelyn, Cora, and Sam to stay with us. Our hearts break knowing our children won’t be near mom and dad during this lengthy ordeal. We already miss them so much, and we know they miss us too. If we can raise enough funds, we can pay for housing for all of us to be together in Philly. This will help us support our children mentally and emotionally as we adjust during this roller coaster of a time. Any remaining funds will help cover the mounting medical costs of surgery and medical needs after baby Pryor is born. Your contribution will help us make the best of a challenging situation for our family. Thank you for your love and support of our family!