“When I met with John and his parents, it was evident that we had to start treatment immediately,” says Dr. Lenke. “His chin was heading towards his chest and his whole upper spine was collapsing onto his heart and lungs.”
Dr. Lenke explained that John needed vertebral column resection (VCR) surgery, an extensive procedure that many experts in the field consider a last resort, requiring complete reconstruction of the spine. Joanne had read about it but was repeatedly warned that it came with a definite risk of paralysis from the neck down.
“John’s kyphosis was severely angled — over 140 degrees of curvature in the end,” says Dr. Lenke. “His situation was only going to get worse. I looked at his mom and dad, and I just said, ‘You have to trust me. This is my area of expertise and I’m optimistic that we can help him, but, unfortunately, your son doesn’t have a lot of other options.’”
Before surgery was feasible, John needed to regain his strength. Dr. Lenke’s team sprang into action, preparing a room at NewYork-Presbyterian Morgan Stanley Children’s Hospital, where he would be treated, and placing John in halo traction to stabilize and lengthen his spine so that weight and pressure could be taken off his lungs and spinal cord. Various departments — respiratory therapy, nursing, physical therapy, and nutrition, among others — each played a vital role in preparing him for surgery.
“I was able to breathe better instantly,” says John. “My throat felt better, my neck felt like it was getting longer. It was amazing.”
After six weeks in the hospital, John’s neck and spine lengthened, his incisions from his previous surgery healed, and he gained nearly 10 pounds.
“He still needed a very complex and risky surgery,” says Dr. Lenke, “but at least there were some health improvements that made this type of surgery possible.”
To keep his spirits lifted, John’s medical team and the hospital’s Child Life Department kept him busy with physical therapy, activities, visitors, art therapy, and more.
“The whole team became like a family to me,” says John. “I felt really special. They made it go by so much faster.”
“There was so much encouragement from everyone,” says Joanne. “The day before surgery, all of John’s nurses and Child Life planned a surprise party for us to celebrate all the progress he’d made. I was just blown away.”