Kelly: Adolescent Idiopathic Scoliosis

"If—" is a poem written in 1895 by the British Nobel laureate Rudyard Kipling: “If you can meet with Triumph and Disaster, And treat those two impostors just the same...” I doubt Kipling had idiopathic scoliosis on his mind when he wrote those words, but they so eloquently apply to the scenario of patients and their families who suddenly find themselves on the idiopathic scoliosis rollercoaster.

Our daughter, Kelly — a vibrant, healthy, athletic young girl — was suddenly catapulted, along with her family, from an innocent, routine “school check” to a condition for which surgery was the only realistic option. The “disaster” hit with no warning signs.

Finding the “Best”

The journey and fight was on. As Kelly’s parents, we gathered information, fought misperceptions that her condition could be managed in another way, and in the process became idiopathic scoliosis experts (“idiopathic” means the cause of the condition is unknown, but it is most likely genetic).

Once the acceptance dawns on you, that you have to entrust your precious child and his or her condition to someone else to “fix,” you know your job is to do whatever you have to do to find the best surgeon and team. These are the experts that can navigate around the nerves, the delicate infrastructure of the human spine, and the delicate balance between mobility or paralysis.

Many ask, “How did you make your choice?” It was simple: We relentlessly used the networks we have to get recommendations for the “best” to operate on our daughter’s spine. There was no space for “second best” or to leave any stone unturned. We asked vital questions. What was the surgeon’s experience, credentials and demeanor? What were the surgical outcomes? What were the qualifications and experience of the staff that support the surgeons?

Our investigations unanimously led us to Suken Shah, MD, and his team at the Spine and Scoliosis Center at Nemours Children’s Hospital, Delaware in Wilmington, Del.

Triumph Revealed

Although the disaster that was scoliosis hit with no warning signs, the triumph presented itself in waves: From the moment we found Dr. Shah and his team, to the play-by-play accounts of how the surgery was going, to Dr. Shah holding my hand as I sobbed with relief when Kelly took her first steps.

The irony is that from the disaster, a never-ending gift of triumph keeps coming. Kelly’s ability to do back flips and back handsprings, to be selected for the high school swim team and tennis team, and to wear a bikini with pride because her scar is unobtrusive makes us realize that we made the right choices for our daughter.