Baylee arrived into the world prematurely at 24 weeks as a fraternal twin and weighing one pound. On her third day in this world, Baylee underwent open heart surgery. She was in the neonatal intensive care unit for 129 days. After months on ventilators, Baylee was discharged to go home.
However, Baylee’s medical issues did not end there. At the age of three, Baylee was diagnosed with scoliosis, and her Pediatrician referred her to Shriners Hospitals for Children – Northern California. Through the first formative years of her life it was clear Baylee’s spine was severely curved which caused her traumatic pain.
Years of wearing body braces and body casts took a toll on Baylee’s mental health. She matured and became more socially aware and her self-confidence declined as her pain increased.
Baylee’s mom, Melissa, declined spinal fusion surgery, because the procedure would stunt her growth and decrease flexibility significantly. Additionally, Baylee’s vocal cord was paralyzed from intubation at birth or during heart surgery due to her small size. Spinal fusion surgery also offered little guarantee of lasting results. In addition, Baylee’s myriad of health problems included poor response to anesthesia and a single functioning vocal cord from her intubation from previous surgeries. These conditions made Baylee a high risk candidate to undergo such a procedure.
As a labor and delivery nurse, Melissa took matters into her own hands and started researching alternatives for her daughter. She wanted Baylee to enjoy a normal, pain-free childhood. One where she could participate in gymnastics and join the Girl Scouts.
“She has one life to live. If she wants to do gymnastics, I want her to be able to do that,” Melissa asserted.
Baylee’s mom found about Vertebral Body Tethering (VBT) which is a less invasive alternative to spinal fusions. The Tether™ is the first commercially available, FDA-approved product used specifically for anterior vertebral body tethering – a surgical procedure and a promising alternative for certain patients with scoliosis who are still growing and need surgery.
It wasn’t long before Baylee was scheduled for VBT surgery at another hospital, but her medical insurance provider denied the procedure. Once again, Melissa found herself searching for an alternative answer.
Baylee’s mom sought out VBT pioneer and Chief of Surgery at Shriners Hospitals for Children – Philadelphia Dr. Amar Samdani who then referred Baylee to orthopaedic spine surgeon Dr. Rolando F. Roberto at the Shriners Hospitals for Children – Northern California. Dr. Roberto told Melissa that Baylee’s surgery would be less invasive and that he would conduct the surgical procedure from the side.
It has been a little over six months since Baylee’s surgery and Melissa reported Baylee is doing great. She no longer needs her body brace, is pain-free and has a lot of confidence. Most of all, Baylee is very proud of the surgical scars. Baylee is even learning how to do back hand springs in her gymnastics class.
When we asked Melissa what she would say to other parents going through this, she stated enthusiastically, “I would do it again in a heartbeat! When you’re on the other side, it’s the best feeling. Baylee is a happy kid and finally, we took the weight off of her emotionally.”