Molly’s story: Human connection and innovative surgery helps teen with scoliosis

Amid the beeps and chirps of monitors in the recovery room, a different sound quietly emerged – it was Molly Murphy singing a Justin Bieber song as her music therapist, Adam Sankowski, MT-BC, strummed a guitar. The day before, Molly, then 13, had an innovative surgery to correct scoliosis in her spine. The music therapy session was not only an opportunity to build back her stamina and practice taking deep breaths, but to also express herself through song. Sankowski started a phrase and Molly, who has Down syndrome and limited expressive communication, finished it, creating a playful duet in an otherwise clinical environment.

When Molly, now 15, was in elementary school, a physical therapist found that she had scoliosis, or curvature of the spine. If a back brace was not able to limit the progression of the curve, Molly’s family knew that eventually, their daughter would need surgery. Because of the scoliosis, Molly’s gait was uneven and one of her hips was positioned higher than the other, and scoliosis surgery would help correct those as well.

When the time came that Molly needed surgery, her mother, Suzie, explored all possible options, which included spinal fusion and a new technique called anterior vertebral tethering. After speaking to a friend whose three children had scoliosis, Suzie decided to explore the latter option further.

“I’ve never researched anything like I researched anterior vertebral tethering. Two of my friend’s children had spinal fusion and one had anterior vertebral tethering,” said Suzie, of Duxbury, Mass. “The recovery after tethering was so different from that of spinal fusion.”

Anterior vertebral tethering surgery, or simply tethering, is a surgical procedure that aims to correct spinal curvature and maintain the spine’s natural growth, function and mobility. In tethering surgery, a doctor places titanium screws and a flexible cord along the outer edge of the spinal curvature. As children grow, the screws and cord gently guide the vertebra into a straighter position. During spinal fusion surgery, an invasive procedure, surgeons connect two or more vertebra with metal rods to keep the spine straight. These rods, however, limit the spine’s natural movement. Later in life, the rods can also wear down the vertebra on either side of the rods.

Suzie’s friend referred her to John T. Braun, MD, a pediatric orthopaedic surgeon at MassGeneral for Children (MGfC), who works on a team that specializes in tethering surgery. After meeting Braun and his team, which includes David Lawlor, MD, of Pediatric Surgery, and Brian Grottkau, MD, of Pediatric Orthopaedics and Pediatric Orthopaedic Surgery at MGfC, Suzie felt reassured and confident that her daughter was in the right hands.

“Dr. Braun has excellent bedside manner. He’s very patient, very calm, very cerebral and he spent as much time with me as I needed. I never felt rushed,” said Suzie. “I also love how all three surgeons work together as a team. They are a dream team!”

At the first appointment, Suzie mentioned Molly’s limited expressive communication and wanted to make sure the team knew how to understand and meet her daughter’s needs. “I was concerned about her being in pain after surgery and not being able to communicate that pain,” said Suzie. “Dr. Braun explained there are clinical and data-driven ways to monitor pain levels. For example, through heart rate and oxygen levels, and I felt reassured that between the technology and the experience of the nurses and doctors, we’d be able to manage my concern.”

On the day of Molly’s surgery, everything went to its well-orchestrated plan. “When I went with Molly into the operating room before she received anesthesia, I remember being blown away by the coordination and the prep work that went into planning and for the surgery itself,” said Suzie. “Everything is such a team effort, from the surgeons to the x-ray technologists to the front desk staff who schedule appointments. They all made something that was really hard as easy as it could be.”

Throughout Molly’s five-day hospital stay on Ellison 18 after her surgery, the care team checked on Molly constantly to make sure she was comfortable. In addition to checking monitors for signs of discomfort, Bess Shannon, NP, of Pediatric Surgery, coached Suzie on how to keep Molly comfortable with over-the-counter medications and through different ways of positioning her body.

After surgery, one of the care team’s goals for Molly was to practice using her voice and practice deep breathing. During tethering surgery, in order to place the tether along the spine in its proper position, surgeons must temporarily collapse one of the patient’s lungs. Practicing deep breathing is one way to strengthen the lungs after this type of surgery, which Molly was able to work on through singing. Music therapy, according to the American Music Therapy Association, is the clinical, evidence-based use of music interventions to help patients accomplish goals by working with a board-certified music therapist. It helps address physical, emotional, cognitive and social needs of patients through singing, creating, moving to or listening to music.

“Music therapy is tailored to what each patient needs and what their treatment plan is. When Molly started to use her voice, that was great progress,” said Sankowski. “It’s also nice to have a slice of something fun and familiar amid the overall scariness of staying in the hospital. Music is really motivating and engaging, and it helps patients see that hospitals are not always scary. It also provides a break for families so they can see their child enjoying something and having fun.”

Almost two years after surgery, Molly is doing much better. Her hips are more level and the curve in her spine was corrected to a curve of someone who has scoliosis but wouldn’t need surgery for it. “We knew the curve would never be 100% corrected, but the difference is incredible,” said Suzie. “She sits up straighter and she has a normal gait when she walks. You’d never know she had back surgery. She is safe, she is healthy, she is happy, and that’s all I care about. The surgery is also preventative for musculoskeletal issues down the road.”