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Bent but beautiful: Izzy’s story

09/26/2017

Scoliosis patient Isabella King aims to ease the trauma of fellow patients by raising awareness of scoliosis and donating items to Floating Hospital.Isabella King is not your average 16-year-old. She devotes much of her spare time to a charity she founded, creating bracelets and custom-tee-wearing teddy bears she regularly delivers to scoliosis patients recovering from spinal surgery at Floating Hospital for Children at Tufts Medical Center

Izzy came up with the idea as a seventh grader, two years after she was diagnosed with adolescent idiopathic scoliosis (AIS) herself. “I wanted to make people feel less alone, and make them feel comforted,” she says. According to the National Scoliosis Foundation, scoliosis—a musculoskeletal condition resulting in sideways spinal curves—affects approximately seven million Americans of all ages, with AIS accounting for most cases. 

“Idiopathic means no known underlying cause,” explains Dr. Stuart Braun, Chief of Pediatric Orthopedics. He has overseen Izzy’s care since 2013 and points out that while AIS afflicts roughly one in 50 kids between ages 10 and 18, the need for surgery is rare. “Most commonly, there is really no treatment other than education and strengthening exercises,” he says, and if the curve progresses (worsens), wearing a back brace as prescribed can stabilize the majority of cases. 

Bracing for a Cure

Scoliosis patient Isabella King aims to ease the trauma of fellow patients by raising awareness of scoliosis and donating items to Floating Hospital.Izzy faithfully wore back braces up to 23 hours a day for four years—from ages 11 to 15—despite initial discomfort, brace-induced sores, and teasing from schoolmates. “At first, I couldn't carry anything, I had to sit on a cushion, and take the elevator at school,” Izzy recalls. “I wasn't allowed to play sports and had to take modified gym.” 

Her friends immediately bolstered her spirits, her mom, Page, taught her to wear a layer beneath her brace to prevent irritation, and over time, Izzy’s confidence won out. “Every year, I started showing my brace a little bit more and stopped being so self-conscious,” she says, which eventually led her peers to admire her bravery and all but forget her condition. 

Progressing Curves

Despite her dedication, Izzy’s curves progressed, and eventually, Dr. Braun recommended surgical treatment. Spinal fusion surgery, as explained by the American Academy of Orthopaedic Surgeons, can substantially straighten a patient’s major curve and prevent its advancement by realigning the curved vertebrae and allowing them to heal into a single, solid bone, thereby staving off a potential long-term threat to heart and lung function. 

“We typically don’t recommend surgery until the curve is 45 degrees or more in a growing child,” says Dr. Braun, whose practice is devoted equally to spinal care, and mixed pediatric orthopedics. “If we can get our young patients to skeletal maturity and the curve is less than 50 degrees, it won’t typically get worse through adulthood—the spine will be stable.” 

“The timing [of surgery] is at the discretion of the family,” he continues. “It’s not typically an emergency—even when the curves are progressive.” Izzy couldn’t deny her increasing discomfort, soreness, and poor posture, despite bi-weekly physical therapy visits. So in June 2016, at age 15, she underwent limited thoracic fusion. 

Surgical Straightening

The eight-hour procedure went off without a hitch, thanks to Dr. Braun and his multidisciplinary surgical team: two pre-op and two OR nurses, two anesthesiologists, a resident, a perfusionist (to collect and return any blood loss that may occur, thereby preventing any transfusion risk), a spinal implant expert, and a neurophysiologist (to ensure the brain and nervous system’s communications remain perfect). “Neuromonitoring,” explains Dr. Braun, improves surgical safety, has been standard operating procedure for over decade in the OR, and “is pretty common for any surgeons that operate around the spine.” 

“Dr. Braun is an amazing surgeon,” says Izzy. “He put rods on either side of my spine, then screwed in 17 screws in each vertebrae. I am very pleased with the results, as my back is almost fully straight, it’s easier to walk, and the pain in my shoulders has decreased a great amount due to the fact that I am no longer slouching. I couldn’t thank Dr. Braun and his team enough.” 

For Izzy, that team includes Tufts MC’s hospital staff who nurtured her through her five-day post-op inpatient stay. “The care I received at Floating made my spinal fusion experience so much better. The nurses always made me smile…and they were always so gentle. One nurse in particular stuck with me forever. Nurse Linda did a tremendous job taking care of me and always making me feel better.” 

Building BackScoliosis patient Isabella King aims to ease the trauma of fellow patients by raising awareness of scoliosis and donating items to Floating Hospital.

To allow optimal recovery, Izzy returned home for a low-key summer, with regular physical therapy visits to build her strength and help her regenerating nerves re-acclimate to touch. 

That September, says Page, though Dr. Braun encouraged easing in with half days at school, “Izzy did not want to miss out on any academics, so pushed herself to go back full days. We were scared for sure, but had a meeting with the school to make sure she would have accommodations as needed throughout her day.” 

Dr. Braun closely monitored Izzy’s healing via appointments at six weeks, three months, six months, and 12 months post-op. That one-year anniversary marked a big milestone. While Izzy was thrilled to get the all-clear to play field hockey—provided she continues physical therapy, remains dedicated to building and maintaining her strength, and learns to bend carefully and protect herself from falls—Dr. Braun was happy to see a lack of progress. 

“There are typically many curves in the spine,” he explains. Izzy had three curves, with surgery to correct only the major, structural curve. “The smaller adjacent curves usually improve on their own.” 

“The lumbar curve in the lower part of her back wasn’t structural, so we didn’t fuse it,” he continues. “That lower curve can sometimes progress later, but her lower back has been healthy and stable and has not changed.” Different bones grow at different rates, and “the spine usually finishes its growth about a year to two years before total height has been obtained. Women typically finish somewhere between ages 14 and 16. Guys, between 16 and 18. She’s sort of out of the woods now.” 

Page is elated. “Izzy really has been my hero! I know there are kids going through so much more and I feel for them every day. But you just never know how something like this feels until you go through it. We are lucky it's fixable and with maintenance, she will live a relatively normal life.”   

Scoliosis patient Isabella King aims to ease the trauma of fellow patients by raising awareness of scoliosis and donating items to Floating Hospital.Love Is All Around

Normal, yet extraordinary. For her recent Sweet 16, in lieu of gifts, she asked for bear donations. “I got 30, plus some money, so my friends and I went to Build-A-Bear to make more,” says Izzy. Soon after, she and Page stuffed their car to the gills with bears and bracelets to deposit another mountain of goodies in Dr. Braun’s office for distribution. “I love doing this,” says Izzy, whose impressive efforts recently caught the attention of a Boston TV news station

“She’s an amazing kid,” marvels Dr. Braun. “Most kids take care of themselves, but Izzy embraced this, became more extroverted, and tries to ease the trauma and drama of others. It’s just unbelievable. And her family—even though her mom will not take any credit—is remarkable. They are wonderful people, and their relationship with Floating is spectacular. 

The feeling is mutual. “We couldn’t ask for a better hospital,” says Page. “We already had a good perception of Tufts MC because my husband had three open heart surgeries there as a child. They saved his life! Our perception has only gotten better because Dr. Braun and his incredible staff have done wonders for our daughter, and now they will do wonders for our other daughter, Becca,” who, after four years of Dr. Braun’s careful monitoring, is starting her first scoliosis brace at age 10. When an immediate family member has AIS, asserts the NIH, a child’s risk of developing it increases, though its triggers are believed to be a combination of genetics and environment. 

“I’ll see Isabella as long as she wants to continue under my care,” says Dr. Braun, with the next planned visits two years post-op, two years after that, and then another five years later. 

In the meantime, Izzy will continue to support her fellow patients. Speaking out and cheering them on via her scoliosis awareness page. Raising money to make bracelets, stuff bears, design tee shirts, and deliver them to Tufts MC. She does this quietly out of love, empathy, gratitude, and the pure joy of giving. “It’s my passion,” she says. 

To learn more and support scoliosis awareness, visit: http://www.bentbutbeautiful.com/ and https://www.facebook.com/bentbutbeautiful/.