08/20/2025
Thea has officially made it into Ortho surgery this morning! After 3 long years of repeated rescheduling due to illnesses, clinical trials, change in surgery and FDA hold ups…we are finally here! We apologize for being so quiet about updates on her page over these three years, but getting to this point has felt superstitious. Just as soon as we would begin to talk about and plan for our next prospective date, another setback would pop up.
As frustrating as these set backs became, I can’t help but think this journey was always God’s plan. Originally, we had planned on reconstructing her dislocated hips & releasing her many contractures to allow her to spend more time in her stander. Back in January, during one of our preop appointments for the hips and contractures, we were informed Thea’s scoliosis had officially become the top priority. Our sweet girl has a thoracic/lumbar curve of 75 degrees and a proximal thoracic curve of 47 degrees. With her healthcare team, Ryan and I have selected the Shilla Growth Guidance procedure for her treatment plan.
She will receive two full length rods, from T3 to her pelvis, and vertebral fusion from T11-L2. Her surgeon, Dr. Luhmann, has performed the most Shilla procedures in the world. Dr. Luhmann and Dr. McCarthy (Dr with the 2nd most Shilla procedures performed in the world) have been working for many years on creating the first of its kind hardware for the Shilla called “VerteGlide”. Two full length rods are placed on either side of Thea’s spine. From there, little additional hardware is connected to the outsides of her vertebra that allow her to continue to grow, while passively “sliding” up and down the rods in place, constantly guiding growth in a straight supported fashion. Typically, Shilla hardware needs to be replaced every 3-5 years due to wear and tear, if the hardware did not require any revisions before then. Breakage was almost expected and remained a major drawback when considering which procedure was best for your child’s scoliosis. The VerteGlide system is made of much stronger material, expected to last 5-6 years before needing replaced with even less chance of early breakage/revisions, has a much smaller profile and the friction is reduced down to only 15% of what the original Shilla hardware had between the rods and vertebral traction devices.
Thea, our little light, is the 2nd individual in the world to receive this new breakthrough in technology created for this particularly vulnerable patient population. God’s plan🙌🏼
The ultimate goal of this surgery is to reduce unnecessary additional surgeries for revisions before patient reaches skeletal maturity, which is when she will undergo a full spinal fusion.
This morning has been very bittersweet. We’ve prepared so many times before this point and although we hate that she has to have this done, we are confident in this decision and the journey that has led us to today. The respiratory and digestive function benefits are needed. In Thea style fashion, she was brave, positive, and strong in every moment of preparation. We have faith our little light will conquer this step in her journey just like each before this, with Grace! ❤️
