Seventeen-year-old Shane is a charming and excitable kind of kid. Shy when first meeting new people, he quickly becomes animated when talking about his favorite activity: rapping. His newest song: Role Modelz. It’s all about his journey with idiopathic scoliosis and his eventual treatment with spinal fusion surgery during the COVID-19 pandemic at Children’s Hospital of Philadelphia (CHOP).

Shane has overcome a lot in his young life. As a baby he was diagnosed with two  chromosomal abnormalities – variant 667kb duplication of the gene 2q22.1 and variant 659kb of gene Xp22.41. As a preschooler, he was diagnosed with autism spectrum disorder; and when he was 5, his parents learned their son had scoliosis, a type of spinal deformity.

At the time, Shane’s spinal curve measured 22 degrees. Doctors warned the family from New Britain, PA, that if the curve worsened beyond 50 degrees, Shane would need surgery. With Shane’s other health issues, his family opted to delay spine surgery as long as possible.

Steadily worsening spine curvature

Over the years, Shane’s genetic disorders and learning issues demanded more immediate attention. At a visit with CHOP’s Spine Program in October 2018, the time had come to act on his scoliosis. Shane’s spinal curve had progressed to 56 degrees and was impacting his daily life.

“Because Shane has special needs, we worried he wouldn’t handle surgery well,” says his mom, Diane.

The family met with Patrick J. Cahill, MD, an attending orthopedic surgeon and the Robert M. Campbell Jr. Endowed Chair in Thoracic Insufficiency Syndrome, and Jason R. Smith, PA-C, MPT, ATC, a physician assistant in the Orthopedic Center. The pair helped Shane and his family feel more comfortable with the prospect of surgery by answering all of their questions and addressing their specific concerns about Shane’s potential treatment and recovery.

“Dr. Cahill and Jason made us feel comfortable with the decision to pursue surgery for Shane – despite his other conditions – and to get a permanent solution for Shane’s scoliosis,” Diane says.

Dr. Cahill shared with the family that once a spinal curve exceeds 50 degrees, it starts to take on a mind of its own and would continue to worsen – even if Shane stopped growing. Most forms of scoliosis dramatically worsen during growth years. The fact that Shane’s curve was still worsening at age 15 was concerning.

The team recommended spinal fusion surgery to halt the worsening curve and stabilize his spine, and explained that they would place rods and screws over the length of Shane’s back to prompt the vertebrae to fuse together into one solid bone. The treatment, known as spinal fusion, would permanently correct Shane’s scoliosis.

Tests and setbacks

To ensure safety in Shane’s surgery, the team ordered an MRI of Shane’s spine to ensure there were no additional structural problems. Unfortunately, the MRI initiated one of the hardest periods in Shane’s life. In order to obtain clear images during the scan and decrease the psychological stress from being inside the noisy machine, Shane was placed under anesthesia.

After the scan, Shane experienced a dramatic change in his typically outgoing personality. Doctors believed Shane had an atypical reaction to the anesthesia and needed time to emotionally recover. Therapy helped. Shane also developed wide-spread acne on his back, which clinicians needed to clear up before surgery to ensure bacteria from his acne didn’t spread or cause a severe infection.

Because of Shane’s delicate mental state, the medications typically used to treat his acne could not be used at first. With time, patience and innovative care strategies by Danielle L. Brennan, MSPA, PA-C, a physician assistant with the Dermatology Section at CHOP, Shane’s inner and outer selves healed nearly two years after delaying his surgery.

“Danielle’s sensitivity to our situation was amazing,” Diane says. “She worked with me to get Shane’s acne under control so he was ready for surgery.”

However, just as Shane was ready, COVID-19 hit the United States, prompting a shutdown of all but the most essential services. Non-emergent surgeries were delayed until CHOP leaders believed they could safely deliver care – especially for an emotionally vulnerable young man.

Recovery after spinal fusion surgery

On June 15, 2020, Shane underwent spinal fusion surgery with Dr. Cahill. This time, Shane did not have a reaction to the anesthesia, and his surgery was successful. Shane’s parents provided post-op care for him in the comfort of their home.

“The first two weeks after surgery were a bit rough because Shane was so hypersensitive to touch,” Diane says. “The team at CHOP was able to help by suggesting tools – like a triangle booster – that let him rest, without lying flat on his back and increasing his risk of infection.

“We’re so happy with Shane’s results – and even happier that it’s over,” Diane adds.

Four months after surgery, Shane was able to celebrate his birthday at one of his favorite places: Disney World. He enjoyed the rides, food and entertainment.

Today, Shane is back to his usual fabulous and quirky self – standing taller (literally) against all odds. His mom says his strength, personality and creativity have made a full recovery, in addition to his spine. Now, he’s focusing on what’s important to him: his hopes, dreams and rap music.

Below is a song Shane wrote about his experience at CHOP.

ROLE MODELZ

Look at me I made it / ya’ll can do dis
put your mind to it / put your mind through it
look at da aftermath/ you’ll turn out fine
don’t be afraid
look mom I made it / I became stronger
thank God I made it / flex like a model
hit da throttle / now that my back is stronger
I can work harder