Early Onset Scoliosis: Annaka’s Story
Patient Story Highlights
It’s party time in the Child Life Activity Center of Johns Hopkins All Children’s Hospital.
Amid brightly colored decorations and music thumping out a happy beat, the Child Life team works their magic as they coax shy young patients to forget their troubles, let loose and have some fun.
But one tiny little girl doesn’t need much coaxing.
In fact, she is stealing the show.
Seven-year-old Annaka is dancing like no one is watching — 30 pounds of unapologetic joy — laying claim to every inch of the space she’s taking up.
“She has a big personality,” her mom, Jeannette, says. “She is happy every day, all the time.”
Never mind that Annaka is strapped into full halo-gravity traction — a metal ring secured to her skull with pins — connected to a pulley system used to straighten her spine.
Annaka is what you’d call an overcomer.
Born at 32 weeks with a rare chromosomal disorder and a host of complications, Annaka would spend the first four months of her life in the neonatal intensive care unit (NICU).
Eventually she would be diagnosed with cerebral palsy, one in a long list of diagnoses to challenge her.
But one diagnosis in particular threatened her mobility, her vital organs, even her very life.
Early onset scoliosis is a deformity of the spine that is diagnosed before the age of 10. It is far more rare than standard scoliosis, an abnormal twist of the spine, usually diagnosed in adolescence. Kyphosis is different — it’s a forward rounding of the spine, more difficult to correct and, if left untreated, can lead to paralysis during correction of her spine.
Annaka has both the twisting curve and the forward rounding in her upper spine. And that poses big problems.
Both issues in her age group can be life-threatening if left untreated.
“As her spinal curves get larger, they can compress the heart and lungs and make it harder for those organ systems to work,” says Ryan Fitzgerald, M.D., a board-certified orthopaedic surgeon specializing in early onset scoliosis.
Fitzgerald is part of the Scoliosis and Spine Surgery Team with Johns Hopkins All Children’s Hospital in St. Petersburg, Florida, and a leading surgeon with Children’s Orthopaedic & Scoliosis Associates, LLP (COSSA), a group with decades of combined experience treating complex scoliosis and kyphosis cases in children.
Orthopaedic specialists generally try to use a range of interventions other than surgery in a child’s early years — in order to put off a final corrective spinal fusion surgery a child may need until after age 10. This allows the child’s chest cavity to grow and the lungs to develop more fully.
But sometimes using a cast or a brace over time simply isn’t enough. Given the severity of Annaka’s spinal curves, she needed something more.
Fitzgerald and the scoliosis team recommended a surgical procedure to place a type of “growth friendly” rods along Annaka’s spine. The magnetic expansion control rods could then be lengthened by an external remote control device in the doctor’s office every few months as Annaka grows. This plan would cut down on the number of surgeries she would need over time.
As if that news weren’t challenging enough for a parent to absorb, Annaka’s mom would learn what needed to come before the surgery to implant the “growing” rods. Annaka’s severe kyphosis meant she would need some extra preparation.
She would need to spend six to eight weeks in the halo-gravity traction device — a pulley system that gently helps to lift and straighten a child’s spine over time. A separate surgery to secure the device to her skull would be required.
It can be a frightening idea for a child and a parent, as the halo device looks like it should certainly hurt. But, other than a headache the first couple of days, it generally doesn’t. Many children who suffer with scoliosis actually begin to feel better as it relieves some of the pressure on their spines. The traction would help mitigate Annaka’s severe kyphosis and relax her spine enough to be in an ideal position to accept the “growing” rods she was to receive.
Fitzgerald has two little boys of his own. That, he says, always guides his decisions as a surgeon.
“My patients become my kids,” Fitzgerald says. “In my mind, I always put my own sons in the patient’s position and ask, ‘knowing what I know medically, would I recommend this for one of my own children?’”
The answer was yes.
It’s a Process
Annaka’s surgery to place her halo device went very well.
“I had been so worried beforehand, about possible facial paralysis, all these things,” Jeannette says. “But actually doing it was like a walk in the park.”
Annaka would spend seven weeks in the hospital, as her orthopaedic team gradually increased the weight on the halo-gravity traction pulley system to gently straighten her spine.
She was free to move and play and make friends. Seven weeks is plenty of time to learn your way around a hospital. Plenty of time to win the hearts of staff who were rooting for Annaka.
Her doctor visited frequently.
“Annaka loves Dr. Fitzgerald,” Jeannette says. “He’s amazing. I love how far above and beyond he goes to make you happy and feel like you matter.”
After seven weeks, the halo-gravity traction system had done its job.
“We were able to improve her kyphosis by close to 50 percent, which is really great,” Fitzgerald says.
Annaka was ready for her next big step – her “growing” rods.
On Nov. 11, 2022, the scoliosis surgery team removed Annaka’s halo device and placed two rods along the length of her spine to help keep her scoliosis in check and allow her spine to continue growing.
The surgery went smoothly and within days, Annaka was able to go home to continue healing.
Cautious at first, she soon regained mobility, moving and playing busily in her toy kitchen, an inspiration from the one she had come to love playing with in the Child Life Activity Center at the hospital.
A few months after surgery, it was time to get her first “turn,” to lengthen the rods in her back to accommodate her growth.
In a brief, painless procedure, Fitzgerald located the magnets in the rods under Annaka’s skin and activated the remote controller to expand the rods.
When he reported a successful lengthening of about a centimeter, Annaka’s mom felt enough relief to joke with the doctor.
“I really want her to be able to ride all the rides at Disney,” she quipped. “Can you just go ahead and make her 42 inches?”
Today Annaka is adjusting well, happy and strong.
Her rods will be lengthened every few months as she adjusts to a new and straighter spine and all that it will mean for her in the future.
This little girl’s medical journey will continue to be a complex one.
But for a mother who has given so much to create normalcy and joy in her daughter’s life, this is a giant and encouraging milestone.
“I want her to experience as much of the world as she can, to do whatever she wants to do in life,” Jeannette says.
Annaka is on her way.
Ryan Fitzgerald, M.D., is on the medical staff of Johns Hopkins All Children’s Hospital, Inc. (“JHACH”), but is an independent practitioner who is not an employee or agent of JHACH.