Written by Carmell Burns
Logan, Utah
Braydon has been active all of his life. He loves golfing, fishing, hiking, Frisbee, flying airplanes and more. Because of his amazing attitude on life, and the amazing people at Primary Children’s Hospital keeping life as “normal” as possible, Braydon is able to live a full and active life.
When Braydon was born, we had two other children at home (ages 9 and 5). We suddenly changed our parameters of “normal.” Surgery and medical appointments became part of our “normal” along with homework, dance lessons, soccer practice, football games, etc. Our family had to adjust (mentally and physically) to the new “normal.” We talked a lot. We tried to make sure we kept some normalcy in life as we continued on our journey. 18 years later and we are nearing the end of the “routine” surgeries. I think each member of our family is a better person because of this experience and the lessons learned - many life-lessons for all.
During a routine OB ultrasound at 19 weeks gestation we were told that Braydon would be born with several birth defects (VACTERL Association). He was born with severe congenital scoliosis, rib anomalies, a clubfoot with extra toes, kidney malformations, a tethered spinal cord (fatty filum) and GI issues. That is a lot to take in all at once.
The first week of Braydon’s life we met with several specialists at Primary Children’s. We saw genetics, urology, orthopedics and had many tests done. Our first appointment with Dr. John T. Smith was when Braydon was five days old. Dr. Smith and the orthopedic team have been with us ever since! Braydon wouldn’t be a healthy, active teenager with them.
Braydon’s first surgery (bladder surgery) happened when he was four weeks old. All of the staff at Primary Children’s could tell we were new at this surgery game. They helped us in so many ways to feel like we were important, and that our questions and suggestions were important. Many times we have felt like the only patient they needed to take care of that day. Braydon had four surgeries before his first birthday, including a spinal fusion at 11 months old. This is a unique surgery for someone so small. There has only been one year Braydon has not had a surgery – 2000. At age six, Braydon had VEPTR devices placed to support his curved spine and his collapsing chest. For 11 years he had surgery every 6 - 8 months) to expand the devices in his back to grow with his natural growth. 34 orthopedic surgeries (38 total surgeries) later and he’s doing fantastic!
Braydon is looking forward to attending college next year and starting new adventures. He has been an amazing example to many people.
