Kenley’s Story: Living With Spastic Cerebral Palsy

Kenley McElroy was born prematurely, at 24 weeks of pregnancy, and spent the first four months of her life in a New York hospital. For the first three years of Kenley’s life, her parents began to notice Kenley was struggling with the tone and tightness of her right leg, and the ability to get her right heel down when walking. To learn more about the challenges Kenley was facing, Kenley and her parents visited several different specialists to learn more about Kenley’s condition and available treatment options. Visit after visit, Kenley and her parents unanimously received a diagnosis of spastic cerebral palsy, the most common type of cerebral palsy, which causes muscle stiffness that can lead to mobility issues. Along with this diagnosis came a host of treatment options, including casting, botox injections, physical therapy, and surgical intervention. Overwhelmed by the array of treatment options, the family turned to a trusted physical therapist for advice who recommended that they visit a New York-based spasticity clinic for further evaluation.

“The physician team was knowledgeable, but the personal connection just wasn’t there for me. I knew I couldn’t continue to work with a team that I did not connect with,” said Lauren, Kenley’s mother. “When I told my friend about my experience, they recommended The Valley Hospital’s Center for Pediatric Spasticity, in Ridgewood, NJ, so I decided to give them a try.”

 

Receiving a Second Opinion

In 2014, Kenley and her parents visited Valley’s Center for Pediatric Spasticity to receive a second opinion. After a multidisciplinary evaluation from the Center’s team of practitioners, including board-certified pediatric physiatrists, neurosurgeons, neurologists, and orthopedists; social workers; physical therapists; orthotists; durable medical equipment providers; and nurse practitioners; Kenley, age three at the time, was recommended to begin physical therapy through Valley’s Kireker Center for Child Development, to mitigate her symptoms. In addition to physical therapy, Angela D’Alessandro, MD, Pediatric Physiatrist and Clinical Director, Kireker Center for Child Development, would monitor Kenley’s progress.

“Physical therapy was very helpful and Kenley loved going. It was a great way to keep her active and stimulate her muscles. After a few months of physical therapy, the spasticity team recommended that we try additional management practices, including casting and Botox injections, as part of Kenley’s treatment plan,” explained Lauren.

Casting, a non-invasive treatment, gently stretches contracted muscles over a period of time to help prevent the muscles from further tightening. This management practice can help reduce pain and increase mobility. Botox injections, on the other hand, reduce muscle tightening and promote normal nerve communication through an injection.

“The combination of weekly physical therapy paired with annual casting and Botox injections worked really well for Kenley. We saw an overall improvement in her mobility for several years,” explained Lauren. “Around January 2019, five years after our initial visit, we noticed that Kenley’s most recent Botox injection and casting was not working as well as it had in the past.”

 

A Turning Point in Kenley’s Treatment Plan

With concern that the treatments Kenley was receiving were beginning to lose their effectiveness, Kenley and her parents returned to the Center for Pediatric Spasticity for a routine check-in with Dr. D’Alessandro.

“This checkup was the turning point in Kenley’s treatment. After a collaborative evaluation, we concluded that Kenley’s body and spasticity was becoming accustomed to the non-invasive management practices she had been undergoing over the last five years,” said Dr. D’Alessandro. “We also noticed that Kenley was experiencing increased difficulty getting her right heel down when walking, and function was no longer improving. As a result, our team decided to explore two surgical treatment options.”

The two surgical treatment options presented to Kenley and her parents included selective dorsal rhizotomy (SDR), a long-lasting, permanent treatment option to correct the misfiring signals to the muscles that cause spasticity; and the lengthening of the Achilles tendon, a technique used to improve mobility by elongating a contracted Achilles tendon.

“After extensively researching both surgical procedures, we decided to move forward with the selective dorsal rhizotomy procedure. We felt SDR would directly attack the root cause of Kenley’s underlying spasticity,” explained Lauren.

 

Selective Dorsal Rhizotomy

At the age of eight, Kenley underwent selective dorsal rhizotomy performed by pediatric neurosurgeon, Richard C. Anderson, MD, FACS, FAAP.

“Our multidisciplinary team unanimously believed that a selective dorsal rhizotomy would be the best way to manage Kenley’s spasticity. She is an excellent candidate because she was born prematurely, the spasticity primarily affects her legs, she is already able to walk, and she is cognitively bright and willing to participate in the postoperative rehabilitation,” explained Dr. Anderson.

Kenley spent three days in Valley’s inpatient pediatric intensive care unit (PICU) before being transferred to an inpatient rehabilitation center where she received daily therapy to learn to stand and walk again.

“The SDR procedure with Dr. Anderson was the best thing I could have done for Kenley. Her posture and leg relaxed immediately following the procedure and we began to see improvements in her mobility as she relearned how to stand and walk,” said Lauren.

 

Improving Mobility Through the Achilles Tendon

Five weeks after her SDR procedure, Kenley returned home from the inpatient rehabilitation center and resumed physical therapy. As several sessions concluded, Kenley’s physical therapist noticed that while the SDR procedure had loosened the muscle contractures in Kenley’s right leg, her spasticity had stunted the growth of her Achilles tendon, presenting additional mobility challenges.

Approximately a year and a half after her initial SDR procedure, Kenley underwent Achilles and hamstring lengthening, by pediatric orthopedic surgeon, David E. Konigsberg, MD, to loosen her muscles and improve mobility.

“After her SDR procedure, we noticed that some of Kenley’s tendons remained too short due to years of increased muscle tension,” said Dr. Konigsberg. “The orthopedic procedures Kenley underwent lengthened the tendons that were too small for her growing body after years of muscle imbalance. The combination of her neurosurgical procedure and tendon lengthening will help her walk much more efficiently.”

After her procedure, Kenley’s leg was placed in a full leg cast, for five weeks, to allow her tendon and hamstrings to heal. Kenley then transitioned to a walking boot for an additional six weeks.

  

Starting the Next Chapter

Kenley McElroy is now ready to start the next chapter of her life, one filled with school, friends, swimming, and horseback riding.

“Kenley is back to school and she’s doing well. She is walking the best she ever has, with help from assistive devices, and she had a big growth spurt,” explained Lauren. “Looking back, she needed both the SDR and Achilles tendon lengthening surgeries. The SDR procedure addressed the underlying spasticity she was experiencing and the Achilles tendon lengthening took it a step further and improved her mobility even more.”

Kenley still attends physical therapy sessions weekly to continue to build strength and improve her mobility. She also attends bi-annual check-ins with Dr. D’Alessandro and the Center for Pediatric Spasticity team to monitor her progress.

“Kenley has always been high functioning, which has caused other physicians to be hesitant about her treatment. Valley’s team never shied away, instead they asked, ‘how can we help her in the long run?’ They really paid attention to the details and helped improve Kenley’s long-term quality of life. With this expertise and attention to detail, it’s definitely worth coming for the second opinion.” 

To learn more about Valley’s Center for Pediatric Spasticity, please visit ValleyHealth.com/Spasticity or call 201-251-3304.