Elizabeth, a 12-year-old from a small Kansas town, has a pair of Bugs Bunny sneakers tacked to her bedroom wall.
The sneakers represent a fervent dream of Elizabeth’s – that someday she will run. They belonged to a Shriner who helped Elizabeth and believed in her – who planned to run with her but never got the chance.
Elizabeth’s guardian, her Aunt Pat, says that thanks to Elizabeth’s complex surgical procedure two years ago and her dogged determination, those who know the girl are convinced she will realize her dream and run.
Elizabeth was born prematurely and, at age 5, still hadn’t walked. She had been receiving care locally in Kansas, but it wasn’t specialized enough. Then a neighbor suggested Shriners Children’s. Pat called the location in St. Louis.
At Shriners Children’s St. Louis, Elizabeth had surgery on her hips, which were gradually dislocating, common for children with cerebral palsy who do not walk. The procedure repaired the problems in her hips and helped her begin walking with a walker.
Then, two years ago, an orthopedic surgeon at Shriners Children’s St. Louis, Pooya Hosseinzadeh, M.D., determined the time was right for Elizabeth to have a more elaborate surgery, called SEMLS (single-event, multilevel surgery). Her left knee buckled in and rubbed on her right, and she needed corrections of her feet, among other things.
After her SEMLS surgery and arduous rehabilitation, Elizabeth is learning to use arm crutches. She can stand and balance independently for one to two minutes for the first time.
Elizabeth’s SEMLS surgery “brought her life back to her,” said Pat. “She has a purpose. Now all she does is smile – she’s so happy.”
Sneakers of confidence
The Bugs Bunny fan was John Cordell, a Moolah Shriners Air Patrol member. He would pick up Elizabeth from the airport when she and Pat flew to St. Louis for their appointments, and drive them from the hospital to their lodgings.
One day, Cordell showed up wearing flip-flops. Elizabeth noticed. She lightheartedly reprimanded him, telling him he could never run with her in that footwear.
So, he went out and bought the Bugs Bunny sneakers. Tragically, before he could put them on, Cordell developed an aggressive brain tumor. His wife, Carla, brought the shoes to Elizabeth after Cordell passed away. Cordell had seen Elizabeth walk for the first time but never saw her stand without support.
Multiple surgeons per patient
The sophisticated surgery Elizabeth had is generally just referred to by its acronym and called a “SEMLS procedure.” But that’s the only thing about it that is simple. Multiple surgeons – usually two, sometimes more – work simultaneously, performing different operations to address multiple problems.
In Elizabeth’s case, Dr. Hosseinzadeh and a team performed an operation that included 10 procedures. Her surgery took eight hours. She had procedures on her hips and knees. They rotated her femur and fixed deformities in her feet.
Elizabeth spent eight weeks in a wheelchair after her SEMLS
procedure. Doctors recommend this approach for a single
recovery and rehab rather than annual surgeries.
In the operating room, one surgeon generally works on one side of the body (usually the lower body), and another surgeon works on the other side. The surgeons lengthen muscles, tendons and sometimes bones. They may inject botulinum toxin (Botox) to deaden other muscles. In a newer technique being investigated, they sever sensory nerves in the hope that, without the feedback those nerves provide, patients will have fewer spasms in the muscles. The nerves grow back eventually.
A leader in cerebral palsy care
Shriners Children’s is a leader in the care of children with cerebral palsy. In 2020 alone, the healthcare system treated over 6,700 children with the condition. U.S. News & World Report ranks four of our locations among the “best children’s hospitals for orthopedics.”
SEMLS procedures are a mainstay of care for patients with cerebral palsy at Shriners Children’s facilities.
While cerebral palsy is not technically a progressive condition, the symptoms can worsen. Because it is a neuromuscular condition in which muscles contract involuntarily and are difficult to control, the muscles become stiffer and shortened over time. This tightening of the muscles and the effect on the tendons and joints is what a SEMLS procedure corrects.
Characteristically, in patients with cerebral palsy who can walk, the muscle tightening and the joint difficulties start down low, in the calf, and move up to higher muscles, such as the hamstrings and adductors, as the patient ages.
Before SEMLS was introduced, patients experiencing joint and muscle problems were treated as symptoms arose. The standard treatment protocol was to perform single surgical corrections, typically starting with surgery on the child’s calf, often at age 5 or younger.
Doctors coined the term “birthday syndrome” because patients with cerebral palsy often had one surgery a year, followed by a lengthy rehabilitation, into adolescence.
“In years past, surgeons corrected one issue, let the child heal and then re-evaluated,” said Richard Goldberg, D.O., a physical medicine and rehabilitation specialist at Shriners Children’s Philadelphia. “The idea was to do the surgery, see what the outcome was and then decide what the next step was.”
Innovative motion analysis
A key innovation that allows SEMLS surgery is video motion analysis. A pioneer in the development of motion analysis, Shriners Children’s has 14 locations with a motion analysis center.
The centers look like special-effects film studios. That’s not a coincidence – they employ the same technology Hollywood uses to make movies like Avatar, Iron Man and Polar Express. At Shriners Children’s, cameras record how patients walk and move, and computers analyze that data. The analysis lets surgeons know precisely where all the problems are before entering the operating room.
“Motion analysis helps us understand the main and compensating movement problems,” said Dr. Hosseinzadeh. “That’s extremely helpful for planning our surgery.”
Two years after her surgery, Elizabeth continues to work with a physical therapist weekly, making steady progress and developing new abilities.
Generally, the goal is to improve the patient’s functional level – that is, to get a child who uses a wheelchair on their feet with a walker, to help a child who uses a walker advance to crutches or to help a child who uses crutches reduce or eliminate that need.
Dr. Goldberg said that at Shriners Children’s, orthopedic surgeons are getting impressive results using motion analysis and SEMLS.
“It’s nice to help a child who has never walked before and get them on their feet,” Dr. Goldberg said.
Better timing, single recovery
David Westberry, M.D., an orthopedic surgeon and the chief of staff at Shriners Children’s Greenville, said SEMLS surgery shows that perhaps surgeries were done too early in the past when they were performed one at a time. Those surgeries sometimes had less than optimal results. They sometimes had to be repeated because the muscle contractions were still developing, and the full profile of the patient’s eventual impairments was not yet clear.
With SEMLS, the optimal age for a patient tends to be 9 or 10 years old.
“We’ve learned that if we wait, we can identify all the deviations that a patient is going to have,” Dr. Westberry said.
Recovery after SEMLS is prolonged. Patients may be in the hospital for weeks after their surgery. Elizabeth used a wheelchair for eight weeks after hers. However, doctors say it is better for patients to undergo a single recovery and rehab rather than one every year. A single operation is easier on the patient and less disruptive for the patient and family.
“You don’t want to take anybody back to the operating room over and over again,” Dr. Goldberg said.
Filling Cordell’s shoes
Two years out, Elizabeth is still working with a physical therapist weekly and developing new abilities.
The Bugs Bunny sneakers are on the wall, waiting for someone to take the place of her driver and friend, Cordell, and race Elizabeth.
“One day – oh yeah – she is going to run, and then someone’s got to fill John’s shoes to have that race,” Pat said.
Comprehensive, child-centered care
Cerebral palsy is a complicated neuromuscular disorder characterized by problems with muscle tone and tightness. It can affect mobility, joint health and even aspects of daily living, such as speech and swallowing.
Shriners Children’s has the professionals and medical technology to help with those issues and complications.
A child’s care team includes orthopedic surgeons, physical rehabilitation doctors, and physical, occupational and speech therapists with extensive experience working with cerebral palsy patients. Orthotists and prosthetists can provide braces and supports, and most locations have motion analysis labs, which precisely record movement patterns to detect problems early and comprehensively.
“It’s a great feeling to look at the parents of a child with cerebral palsy and say, “We have all of the resources you are going to need right here: motion analysis, physical therapy, wheelchairs, support services, and even help with independent living skills such as toileting, self-feeding and communication,” said Jeremy Bauer, M.D., a pediatric orthopedic surgeon who works at Shriners Children’s Portland.
Ted C. Sousa, M.D., a pediatric orthopedic surgeon at Shriners Children’s Spokane, said the motion analysis labs and collaboration among staff are the distinguishing characteristics of our cerebral palsy care, creating a synergy that fosters amazing care and continuing improvement.
Unleashing greater potential
Dr. Sousa notes that Shriners Children’s hospitals and clinics are leaders in motion analysis and that the technology permits surgeons to be much more precise and complete in their surgeries and then follow up with the patients afterward with repeat analysis.
It is the repetition that is unusual and essential, he stressed.
“We’re always reviewing our analyses, what we are doing and our results,” Dr. Sousa said. The surgeons, orthotists and other care team members work together to find the best solution for each patient. Sometimes, that means surgery – but not always. The data and the diverse expertise lead the decision-making process.
“It’s THE optimal situation,” he explained.
Orthopedic surgeon Vedant Kulkarni, M.D., of Shriners Children’s Northern California, adds: “Children with cerebral palsy are often underestimated in terms of what is possible for them to achieve. One of the benefits of working here is that there is a collective experience among all the providers about what is possible for them.”
When others say “no” to parents, that experience, combined with technology and innovation, makes Shriners Children’s a place that takes pride in saying “yes.”
Cerebral Palsy Care: Technology is Continually Improving
How Shriners Children’s is advancing treatment for kids with cerebral palsy
Some patients, like Elizabeth, will travel a distance to a Shriners Children’s location for their cerebral palsy care. And with locations across North America, they have options.
Why do they seek us out?
Because Shriners Children’s has advanced expertise, our healthcare system treats thousands of patients with cerebral palsy, and, in fact, four locations are ranked among the “best children’s hospitals for orthopedics” in the United States by U.S. News & World Report.
Not only are Shriners Children’s surgeons, orthotists and therapists leaders in the field, but our hospitals and outpatient sites have “wraparound care.” That means they have all the various support services a patient and their family might need.
And, unlike many other places that provide specialty pediatric care – big, bustling, often academic medical centers – Shriners Children’s is designed just for children and their families, a refuge rather than an overwhelming medical complex.
