Raegan Shepherd will be in the spotlight Saturday, doing what she loves to do.
The 12-year-old Port Huron resident will perform with the Port Huron Figure Skating Club, spinning and twirling across the ice at McMorran Arena during the club’s annual show. Performances are at 1 and 7 p.m.
But what most spectators won’t know was seven weeks ago, Raegan had experimental scoliosis surgery.
“It’s really a newer surgery that people are not aware of,” said Raegan’s mom, Leann. “She was back on the ice in five weeks.
“She had an over 100-degree curve in her spine. Today, it’s 37 1/2 degrees.”
Scoliosis is a disorder in which there is a sideways curve of the spine. Curves can be S-shaped or C-shaped. In most people, the cause of the curve is not known.
Leann Shepherd said her daughter had the experimental surgery Jan 8 — “A date I’ll never forget” — at St. Peter’s University Hospital in New Brunswick, New Jersey.
The surgery, and Dr. Baron Lonner, a scoliosis specialist at Mount Sinai Health Systems in New York, recently were in the news when champion ballroom dancer Anastasia Machenko, 17, was featured in an ABC News report.
According to the news report, Machenko’s upper spine had 76-degree curve and her lower spine had a 66-degree curve. After her treatment, Marchenko said she hopes to continue her dancing career.
Lonner’s treatment, which is not approved by the Food and Drug Administration, is called tethering. It uses screws attached to the vertebrae and flexible cords to pull the spine into alignment.
Shepherd said standard surgery for scoliosis involves placing metal rods on either side of the spine and using a piece of hipbone to fuse the most affected vertebrae together. The drawback is loss of flexibility and mobility.
“Because she was such an active 12-year-old, we couldn’t see her losing mobility,” she said. “You can’t bend from side to side when you have rods on either side of your spine.”
She said she and her husband, Scott, found out about the treatment from Raegan’s figure skating coach.
“They put a screw in each vertebrae that is affected by the curve and attach a tether, a rope basically, through each screw and pull it tight as far as they can get it for the most effectiveness,” Shepherd said.
“Her body, with the growth she has left over, is able to grow,” Shepherd said. “Because the vertebrae are straight, she will be able to grow straight now.”
She said Raegan was cleared to return to the ice five weeks after the surgery.
“She loves figure skating, she’s good at it and she feels comfortable out there,” Shepherd said.
Raegan had competed in November before the surgery and had tested up to senior level.
“I’m amazed by how much easier some of the things are for her to accomplish now,” Shepherd said.
“Her spiral was the most beautiful I’ve ever seen it. I screamed out loud in the arena.”
So to reduce the danger, the plucky girl who just turned 13 is spending a few months at the Greenville Shriners Hospital for Children undergoing a new treatment that slowly straightens her spine through traction using a device that is screwed into her skull.
After about a month of the treatment, she’s happy to report, she’s already gained an inch in height. She’s feeling better as well.
“Before all this, I just used to hurt every day and I couldn’t sit straight and everything was just one big mess,” Meredith said.
“Since this traction, I’ve been able to breathe a little bit better and felt straighter,” she added. “And there’s less pain, too.”
The device is a round metal fixator like those used to immobilize the heads of patients who’ve broken their necks, said Dr. J. Michael Wattenbarger, a pediatric orthopedic surgeon and chief of staff at the hospital.
In this case, it’s used for children who have severe scoliosis, he said.
And it’s attached to the skull by eight screws — two in front and three in back on each side.
Stretching the spine
Called halos, they are attached to an overhead pulley system that slowly adds pressure to pull up the spine.
“We’ve now got 32 pounds of pressure pulling on her,” said Wattenbarger. “The goal is to get 75 percent of her body weight and she’s 100 pounds, so that would be 75 pounds of pressure. The first 30 to 40 pounds are the hardest.”
Each day, the pressure is increased, which stretches out her spine, he said. And as the spine is straightened, the pain is relieved and breathing becomes easier as the pressure on the internal organs is reduced.
“Her level (of curvature) measures more than 150 degrees. And we operate on children who have curves over 50 degrees in general. So hers is very severe,” he said.
“And when she’s got that severe of a curve, there’s a higher risk of neurological injury when we operate,” he added. “So as long as we’re still seeing improvement, we’ll continue that. We estimate about three months.”
By that time, he said, she could be another 2 inches taller.
Meredith, who is the first patient at Shriners to have the treatment, must spend 14 hours a day in traction, about four hours of it standing in a traction walker and the rest in a wheelchair.
Because the procedure isn’t done everywhere, Meredith’s other option was Philadelphia, Wattenbarger said.
But since the family lives in Salisbury, North Carolina — a state that Shriners serves — the hospital decided to begin offering it here.
‘A great sport’
While she had a headache for a couple of days after getting the halo, Meredith can’t really feel it anymore — except for the time she accidentally fell asleep on the back pins instead of her neck pillow, she said with a giggle.
“Meredith has been a really great sport,” Wattenbarger said. “She has a great attitude and has been a joy to work with.”
That’s the type of person Meredith is, said her dad, Roger Mozingo Jr.
“Another little girl came in with a really bad back and (Meredith) went down and talked to her to help her out a little bit,” he said with obvious pride. “She’s an extremely positive person.”
Though he allows that the procedure looked daunting at first, Mozingo said he did some research and spoke to her physician and now he’s focusing on the results.
“It is pretty scary,” he said. “But when you understand how much it helps them … that’s really what you think about. You want your children to improve. And over the last few weeks, I can see progress.”
It’s also tough being away from Meredith for so long. But Mozingo said he’s lucky because his job in sales affords him a flexible schedule that allows him to be with her as much as possible.
“It’s difficult when your child is away from you. She’s my little girl,” he said. “But she’s getting wonderful care. The people at Shriners have shown my family nothing but love and kindness and help.
“And that brings you peace and comfort.”
For now, Meredith has school every day, though it’s limited to an hour. And she has occupational and physical therapy as well.
Otherwise, she spends her time playing games or drawing to alleviate the boredom.
“It’s actually funny how whenever I would sit in school I would be like, ‘Man, I really wish I had this day off,’” she said. “And now that I have two or three months off, I’m like, ‘Man, I miss school.’”
The scoliosis has made it tough for Meredith to do some of the things her friends do. Her back seizes up and hurts when she runs, for example, and she can only play her clarinet for about six or seven measures without running out of breath.
But now, she said, she’s looking forward to recovering from surgery, returning to Charles C. Irwin Middle School, seeing her friends and getting better at the clarinet.
That should be possible with improved lung capacity from the surgery, which fuses the spine and removes some of the vertebrae to straighten it out even more, according to Wattenbarger.
“Kids really recover well from this surgery,” he said. “It’s our hope that her life will be like any other 12- or 13-year-old girl.”
Her dad said the family is looking ahead, too.
“She wants to go ahead and get this done and turn the page,” he said. “I’m really looking forward to her just being a happier and healthier young lady.”