Adolescence can be a challenging time, but everything seemed to be coming together for Sarah Bury: an excellent student, the Liverpool, N.Y. eighth-grader was also thriving as an equestrian, a sport she began at age 8 that had become her life’s passion. She was looking forward to high school, college, and building her equestrian skills.
But a check-up in 2013 revealed that Sarah had scoliosis, a curvature of the spine that affects 2 to 4 percent of adolescents. Sarah’s long hair and bulky winter clothing had obscured the problem from her parents’ view for months, but now they had to move quickly, because the scoliosis was, too. Not present at all in the previous year’s check-up, the curvature was already at more than 45 degrees.
Sarah’s parents Lydia and Keith began searching the internet for answers, which only deepened their worries. “Do not Google your child’s illness,” Lydia said. “As parents we were freaking out and we had a 13-year-old who was also freaking out.”
They began searching for physicians online, and one of the specialists they found was Paul Rubery, M.D., Chair of the Department of Orthopaedics at the University of Rochester Medical Center and a spine specialist.
Rubery was listed as one of the best doctors in the country for scoliosis, so Sarah’s family made an appointment with a doctor in their area and with him.
“He was our second option for a doctor, and after we met him we never went back to the first,” Lydia recalls.
In addition to expertise, the family valued his compassion and communication.“Everything clicked from the first appointment; he was direct and informative,” Sarah’s father Keith recalled.
“He connected with Sarah directly,” Lydia added. “He made it clear that she is his patient. He told us what we needed to know, but his focus was on her and she respected that. After we met with him, Sarah said to us, ‘That’s my doctor.’”
“A child naturally wants to be involved in their care,” Rubery said. “We keep parents involved in any decision, but it’s really important for a young child to be aware of what’s going on, and to have their questions answered and their fears allayed.”
Rubery recommended fitting Sarah with a brace to try a non-surgical solution first. “He told us, ‘We are in a serious place, but if we don’t try a brace first we will always wonder’,” Lydia said. “He tells you exactly how it is.”
Though the family traveled nearly two hours for their appointments, they appreciated the convenience of having all necessary services in one building at UR Medicine’s Clinton Crossings Orthopaedics. “She needed an MRI, she needed to be fitted for a brace, and it was all in the same building, with his office upstairs,” said Lydia. “We were ready to get going on treatment and Sarah got fitted with a brace that day.”
On their trips to Rochester, the family also visited one of the colleges on Sarah’s short list, Rochester Institute of Technology.
Sarah wore the brace through the summer of 2013 at night, but the curvature progressed and surgery became essential. Uncorrected, it could have caused permanent disability and threatened Sarah’s health. The curvature was compressing Sarah’s rib cage and affecting her breathing; left untreated, it could have impacted her cardiovascular system.
“Dr. Rubery explained they were going to straighten out my spine using rods and screws that would stay with me the rest of my life,” Sarah said.
Sarah took the news about surgery the way she takes a jump on a course: eyes forward and steady in the saddle.
“I was scared but I knew I had to do it,” Sarah said. “I knew it was the right thing for me. I cried for a few minutes and then faced it head-on: ‘This is going to be me now.’ ”
“You worry with a child’s spine,” Lydia said. “Her biggest concern was, ‘Am I going to ride a horse again?’ It was her life.”
Since age 11, Sarah had competed in the Interscholastic Equestrian Association, a national non-profit organization that gives riders in grades 6-12 an opportunity to try equestrian sports. The competition format builds problem-solving skills as well as riding skills: Riders are matched with horses on the day of the event, and quickly have to build rapport with an unfamiliar horse and lead it through flat courses and jumps to score points. Riders with good form – including a straight, graceful back – get the most points.
“It’s very hard as parents to hand over your child and feel helpless. But there’s that trust factor – he earned our trust. And I felt like we were in the hands of experts,” Lydia said.
Scoliosis had caused the muscles on one side of Sarah’s spine to grow longer than those on the other side. The 5-hour surgery immediately increased her height by 2 inches, but with her back suddenly straightened, Sarah had to learn how to hold her head up again. Her years riding horses had developed strength in her torso, which helped her recover. Rubery prescribed a series of post-operative stretches for her to do at home, and she followed them to the letter.
Rubery told Sarah it might be a year before she could ride a horse again, but she surpassed all expectations. She got her surgeon’s permission to ride “low and slow” by New Year’s. Lydia remembers the confidence the family felt as Rubery gave her the news: “‘You can do this,’ Rubery told Sarah, then he looked at us and said, ‘And you’re going to let her.’”
“Riding again, I was smiling the whole time,” Sarah said. “I never missed a beat, and I remember just going around and around.”
She did have to wait a while to jump, but that came back to her too. Sarah returned to IEA competition in February 2014 and qualified for regional finals, then the national finals. She’s since qualified for regionals every year, and in 2017, qualified for nationals again, placing eighth. She competed at nationals in 2018 in Syracuse by special invitation, as the rider with the highest IEA competition points in New York state.
“Like many of my young patients, Sarah has tremendous energy and tremendous passion to pursue her talents in school as well as a particular sport,” said Rubery. “I had confidence that she could go back to her chosen sport after her surgery. She really was the key to this success; she had the energy and the drive to follow her recovery plan so that she could get back on her horse and handle riding and jumping. Following her surgery, she’s been phenomenally successful as an equestrian.
“Additionally, some of the newer technologies we have to treat scoliosis benefited Sarah; these advances allow us to do less-invasive surgeries that have reduced impact on the natural anatomy of the spine. These techniques make it possible for patients like Sarah to recover well and go back to the things they love doing.”
Now 18, Sarah is looking ahead. This fall, she’ll begin a 5-year master’s program in applied statistics and actuarial science at RIT on an academic scholarship. And she’ll join the college’s riding team based out of Lehman Farms.
The scoliosis and the surgery to correct it are fading from memory, and she’s back to being Sarah.
“As far as my life going forward, I am a completely normal person,” she said. “We forget it ever happened for weeks at a time.”
Sarah long ago threw away the brace she wore for months, along with any photos of her in it. The family will show you the before-and-after X-rays of Sarah’s surgery, though. The dramatic change to Sarah’s spine catches your eye – and after meeting Sarah, you get to see what the surgery has made possible in the years since, and the years yet to come. That picture couldn’t be more clear.