Selective dorsal rhizotomy surgery followed by intensive physical and occupational therapy enabled Nadia to walk without an assistive device for the first time at age 6.
An emergency C-section at Pennsylvania Hospital brought Nadia into the world eight weeks early, weighing just 3lbs 11oz. With an underdeveloped larynx, jaw and lungs, and an abnormally large tongue, she had breathing issues and stridor — aka, noisy breathing. She also suffered an intraventricular hemorrhage within her first few days of life.
Nadia spent five weeks in the NICU at Pennsylvania Hospital and then was transferred to Children’s Hospital of Philadelphia. There, plastic surgeon Jesse Taylor, MD, performed mandibular distraction surgery, increasing the size of Nadia’s jaw so her tongue no longer blocked her airway. After two more months of care at CHOP, Nadia was discharged home to Cherry Hill, N.J.
Early intervention leads to CP diagnosis
Once home, Nadia began early intervention services, which included regular physical therapy (PT) and occupational therapy (OT). She also returned to CHOP often for follow-up appointments with specialists through the Neonatal Follow-up Program.
When Nadia was 3, her early intervention PT suggested she see a pediatric neurologist. The intense tightness in Nadia’s legs and her inability to walk unassisted made the PT think she might have cerebral palsy (CP).
An evaluation by a pediatric neurologist confirmed the diagnosis. Nadia was referred to CHOP’s Cerebral Palsy Clinic and CHOP outpatient physical therapy. Over the next two years, she had regular appointments with CHOP Physical Therapist Morgan Alcott, PT, DPT, PCS, as well as multiple rounds of serial casting and Botox injections. She made a great deal of progress in terms of her mobility, however, spasticity continued to limit her rate of functional progress.
Morgan mentioned the option of selective dorsal rhizotomy (SDR) — a surgical procedure performed on the lower spinal nerves to reduce spasticity in the legs of children who have CP — to Nadia’s parents, Jaime and Martin. Nadia was evaluated in CHOP’s multidisciplinary Advanced Tone Management (ATM) Clinic, where patients are assessed by a team made up of specialists in Neurology, Rehabilitation, PT and OT. The team is able to assess patients for various surgical procedures including SDR. Assessing patients at the right time for this procedure is crucial.
After the evaluation, the team met with the family and explained that SDR would offer a permanent reduction of the spasticity in Nadia’s legs. With the tightness in her legs gone, she would be able to meet her potential.
Selective dorsal rhizotomy surgery
When Nadia was 5, Attending Neurosurgeon, Benjamin Kennedy, MD, Director of Epilepsy and Functional Neurosurgery with CHOP’s Neuroscience Center, performed the SDR. Following the procedure, Nadia was admitted to CHOP’s Seashore House for six weeks of inpatient rehabilitation. Her days included PT to improve her strength, balance and posture and work toward regaining mobility, as well as appointments with OT, speech, music therapy, art therapy and child life.
After discharge from the Seashore House, Nadia returned to CHOP for OT once a week for six weeks and PT three times a week for a year. As a result of this intense, team effort from Nadia, her parents and her therapists, Nadia was able to walk without an assistive device just one year after surgery.
With three active older sisters, a dad who coaches soccer, and a mom who owns a dance studio, it’s no wonder Nadia has continued to exceed expectations. Now 7, she takes hip hop, ballet and tap classes with her mom and kicks soccer balls on the sidelines with her dad. During a recent trip to the Jersey Shore, she was excited to walk the beach by herself looking for shells. She continues with weekly PT at CHOP with a new goal in mind: running!
“She’s doing amazing,” says Jaime. “She’s gotten stronger and more flexible and able to do the things she wants to be doing. The turning point was the surgery. It’s made all the difference.”