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After 17 surgeries, Sebring teen is glad to be on the mend
By Billy Ludt
SEBRING
Sydney Samblanet sat beside her mother, Tracie McFerren, in their car, as they drove to their Sebring home.
The seven-hour drive back from New York City on Oct. 10 turned into something like 10 or 12 hours, as Tracie doted on her 14-year-old daughter who had just weathered hours of surgery in two operations in about a week.
Despite the discomfort of post-surgery pain, Sydney recalls how eager she was to leave the Big Apple and endure the drive.
They were going home.
Sydney was born with a condition that progressed so quickly, by the age of 2, her spine curvature was at 90 degrees.
In early stages, infantile idiopathic scoliosis can leave those afflicted with a hump. In late stages, it can lead to heart ailments, respiratory problems and paralysis.
“If they have the severe curves, and it’s not treated, they will die of respiratory problems in their early 30s,” said Dr. George Thompson, director of pediatric orthopedics at Rainbow Babies and Children Hospital in Cleveland.
Earlier this fall, Sydney underwent 22 hours of surgery, split between two operations at New York Presbyterian Morgan Stanley Children’s Hospital.
She and her doctors hope the Oct. 5 surgery – her 17th in her scoliosis history – would be her last.
“I’m thankful for the surgeries to be done,” Sydney said, with an eye toward Thanksgiving and the holiday season. “I’m normally just thankful for people to give me food.”
“It was mostly just, I missed being home,” she said. “All of this is hopefully all over.”
DIAGNOSIS
Sydney is an eighth-grade student at Sebring McKinley Junior High School, who has a passion for animals, browsing the internet and playing video games.
Her mom and her sister, Harper, live in a neat ranch home where movies, video games, cats, and the occasional dog, rule.
At 6 months, Sydney was diagnosed with infantile idiopathic scoliosis after a routine pediatrician check-up.
Scoliosis is a disorder that causes a curvature of the spine. It affects about 3 out of every 100 people, and generally appears in children in late childhood or early teen years.
“In this country, infantile is the most rare of the idiopathic varieties, and these kids are neurologically normal kids,” Dr. Thompson said. He has overseen Sydney’s scoliosis progression for most of her life.
The three types of idiopathic scoliosis are infantile, which occurs from birth to 3 years old; juvenile, from 4 to 10 years of age; and adolescent, 11 years and older.
The severity of her scoliosis case put Sydney’s back on an informational poster that hangs in a conference room at the pediatric orthopedic wing at Rainbow Babies.
“I got to look at her about every week as a 3-year-old,” Dr. Thompson said.
EARLY YEARS
To address the rapid curve progression, Sydney was outfitted with a Risser Cast, which is applied to straighten spines, and covers a person’s body from waist to shoulders.
Twice a year, the cast was replaced, and Sydney had to be sedated for re-sizing.
“It allows us to buy one to three years of additional growth without surgical intervention,” Dr. Thompson said.
Once the cast was no longer an option, growing rods were attached to Sydney’s spine. The rods guide the spine, allowing growth and minimizing damage to other body functions.
Growing rods are placed on a patient’s spine with screws used to adjust rod length. Each time a patient grows, the back is surgically opened and rods are lengthened.
Sydney underwent 15 surgeries between age 5 and 13 to have growing rods lengthened.
A study conducted by surgeons Dr. Atul Gawande and Dr. Peter H.U. Lee in 2008 determined the average number of surgeries Americans will have in their lifetime is about nine.
Sydney’s total of 17 operations in her 14 years puts her well above that average.
“She would just walk right into those surgeries,” said Margie McFerren, Sydney’s grandmother. “She was just so brave.”
NYC-BOUND
Sydney and Tracie drove to New York City in July to meet Dr. Lawrence Lenke, an orthopedic surgeon known in the field for treating severe spinal deformities, whom Dr. Thompson recommended, and to schedule an operation.
It was a seven-hour trip to schedule an inevitable hourslong operation performed by a doctor they had never met.
“With the rod lengthenings I had them, you know, 15 times. I knew what to expect when I had one.” Sydney said. “This one was a whole different story. I didn’t know what to expect.”
But before they met Dr. Lenke, Sydney and Tracie had some other business to attend to in the city: going to Nintendo New York. Nintendo NY carries the company’s latest video game hardware and memorabilia and displays every system the company has manufactured.
Sydney’s scoliosis has never limited her mobility, but sports were never of much interest to her anyway. Instead, she devotes her free time to roaming the fictional worlds laid before her in video games.
She’s beaten nearly every Legend of Zelda game in existence, plays Pokemon religiously and zipped right through Super Mario Odyssey, the latest title in the Nintendo icon’s series.
“We both weren’t enthused about what we were driving to New York for, so we made sure to stop at the Nintendo store,” Tracie said.
Once finished at the store, Sydney and Tracie went to New York Presbyterian to meet Dr. Lenke to set a date.
WORSENING CURVATURE
In 2016, Sydney’s lower spine was fused during an operation prompted by a growing rod that broke in her back. The family was told Sydney was finished with surgery.
By April this year, without the rods, however, her curve worsened.
Sydney was diagnosed with proximal junctional kyphosis, which causes rounding of the back. Her spine caused a visible hump in her left shoulder.
The spine formed what appeared to be a question mark in her back twisting into a 120-degree angle.
Tracie knew more surgery was ahead.
The operation was scheduled for Sept. 28. Sydney and Tracie arrived early that morning.
By now, Sydney said surgery had become routine.
“I was like, ‘Oh my god, fine, let’s get this over with,’” she said while throwing her arms up.
For the duration of 12 hours, Tracie sat in the waiting room, periodically receiving updates, being told the operation was going as planned.
About 9 p.m., Tracie was told a complication occurred with surgical monitoring equipment, and the surgeons decided it was best to allow Sydney to heal for a week before resuming the operation.
For the next week, Sydney recovered and underwent physical therapy. Tracie barely left the hospital, sleeping in Sydney’s recovery room every night.
On Oct. 5, Sydney went back into surgery for another 10 hours.
Two of Sydney’s vertebrae were removed and permanent rods were placed along her spine. As a result, Sydney grew four inches, and the 120-degree curve is now down to 40 degrees.
Doctors again said this was her last surgery.
“She is one of the strongest people I know and is still recovering, but now she’s at home and getting stronger every day,” Tracie said.
HOME STRETCH
Thanksgiving is pretty high in Sydney’s ranking of favorite holidays. Christmas takes first place, but Thanksgiving is a close second.
The holiday is usually spent at Sydney’s grandparents, who live right next door. She’s a fan of turkey, stuffing and dinner rolls, but not cranberry sauce.
Not at all.
Sydney has been back home for more than a month now. For a year, Sydney will work to regain her mobility during recovery through gradually walking more and more.
“It feels difficult. Everything feels difficult,” she said. “The more I work it, the more I should be able to move.”
Luckily, she said, she won’t have to carry around school books for a while.
Sydney is taking classes online while she focuses on recovery. She’s biding her time with her studies, browsing the web and playing games on her family’s Nintendo Switch, walking when she can.
“If you were stuck in bed for two months, you’d want to walk around too,” she said. “I just want to go and walk a marathon, but I can’t.”
Grandmother Margie said Sydney has become an area resource on scoliosis. People from the community have come to her with questions about scoliosis and about going through surgeries.
“Stay strong,” she said. “It’ll be over before you know it. If it’s not done yet, just keep staying strong. Every day I was in the hospital, I would try to stay strong.”
Margie said Sydney came in and gave her a pep talk before Margie had knee-replacement surgery.
THE UNDERDOG
Once she is fully recovered, Sydney is looking forward to taking the annual family trip to Disney World. Due to the surgery, the family nixed the 2017 adventure.
Her favorite park under Disney’s umbrella is Animal Kingdom.
Once they return there, Sydney said she’s heading straight for the newly opened attraction, Pandora, based on James Cameron’s movie, “Avatar.”
As for her favorite animal, it’s the spotted hyena.
“They have an arched back, just like mine was,” she said.
“I think it’s kind of because they’re misunderstood animals,” she added, “and I tend to gravitate toward misunderstood things.
“You take care of the underdog, huh?” Margie asked.
“Yeah,” Sydney said.