scoliosis Archives - Nemours Blog | Expert Advice on Children’s Health & Wellness

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scoliosis

Kady’s Scoliosis Journey (In Her Own Words)

When I was 6 years old, my mom noticed that my collar bone was higher on one side than the other. Since both my aunt and my grandfather have scoliosis, my mom was familiar with what it looked like. She had contacted a neighbor who was a doctor, and he came to our house to do a regular check to see if I had scoliosis. He said I didn’t have it, but my mom had a gut feeling that something was up, and she took me to Nemours Children’s Hospital, Florida. My mom and dad found Nemours Children’s when we moved to Lake Nona in 2014. Nemours became our primary care provider, and my siblings and I would see our pediatrician at Nemours. When my mom thought that I might have had scoliosis, things became a bit more serious. My father is a personal injury and medical malpractice attorney. Because […]

Scoliosis Awareness Month: Sadie’s Story

During the first few weeks of her life, Sadie’s parents noticed that she wasn’t meeting growth milestones. After several visits with her pediatrician and other specialists, she was ultimately admitted to a local children’s hospital where she underwent multiple tests to determine the cause. “They found an ovarian torsion that had caused a large mass in her abdomen that was removed during emergency overnight surgery,” shares Sadie’s mother, Ashley. “We hoped that surgery would be the end of the road for her medical complexities, but it turned out to be only the beginning. While she was still in the hospital, she was also diagnosed with torticollis, and upon further orthopedics follow-ups, it was realized that she had both hip dysplasia and scoliosis. Due to the number of diagnoses she had already accumulated within her first six months of life, she was referred for further genetic testing. A whole exome sequencing […]

Scoliosis Awareness Month: Island’s Story

Born with esophageal atresia type A and a history of chronic pneumonia, Island’s health journey has been far from straightforward. At the age of 9, the diagnosis of thoracogenic scoliosis added another layer of complexity, impeding even the simplest of tasks. He struggled to tie his shoes and often experienced intense back pain while doing everyday things. Sitting in class, walking, and even trying to sleep at night proved difficult. At Nemours Children’s Health, Jacksonville, Island was surrounded by specialists who treated him with care, skill, and a dedication that went beyond the clinical. His journey began with a comprehensive evaluation by Dr. Kevin Neal, an expert orthopedic surgeon, who diagnosed the severity of his scoliosis and recommended spinal fusion surgery. This procedure, which involves fusing vertebrae together to straighten the spine, was a critical step in managing his condition and improving Island’s quality of life. The care Island received […]

Scoliosis Awareness Month: Carine’s Story

Carine’s story sheds light on the challenges of living with scoliosis and offers hope and inspiration to others facing this diagnosis. Through her advocacy and personal experiences, Carine aims to raise awareness and provide a voice for those navigating scoliosis treatment. During a routine check-up at 12 years old, her pediatrician, Dr. Odett Brown at Nemours Children’s Health, The Villages, Florida, noticed a slight curve in her spine, a subtle but significant detail that hadn’t been caught before. “I was doing the bend over test and she saw mild scoliosis in my back,” shares Carine. “I didn’t worry about it for a while until she saw it again a few months later and referred me over to Dr. John Lovejoy.” This referral was the first step in a journey that would impact Carine’s life. Dr. Lovejoy at Nemours Children’s Hospital, Florida conducted a thorough examination and confirmed the diagnosis of […]

From Patient to Purpose: Isabella’s Story

At just 2 years old, Isabella was diagnosed with necrotizing fasciitis, a rare and life-threatening condition that began in her back and later spread to her right leg. The aggressive nature of the disease required intensive medical intervention. Physicians at multiple hospitals had to perform surgeries to remove infected muscle and tissue, a process that was both physically and emotionally taxing for Isabella and her family. Following the surgeries, Isabella was placed in a medically induced coma for two months to give her body the best chance to heal and fight off the infection. When she finally emerged from the coma, the next phase of her journey began. She was transferred to a third hospital, where she underwent physical rehabilitation and skin grafting to repair the extensive damage to her back and leg. Despite the challenges, Isabella’s resilience and determination shone through, and she made significant progress in her recovery. […]

Care Worth Following: Rylee’s Story

Born with Congenital Diaphragmatic Hernia (CDH) – a diaphragm condition that has led to asthma, gastroparesis, and scoliosis – 14-year-old Rylee has been in her fair share of doctor’s appointments. Through family moves and changing health systems, one thing has remained constant throughout Rylee’s care: Dr. Joseph Khoury. “We first met Dr. Khoury in Birmingham, AL,” shares Rylee’s mom, Allison. “We’ve followed him to different hospital locations for treatments with scoliosis from her birth defect. Her treatments started when she was 6 months old with Mehta castings for a year and a half and then began providence brace(s) until her bone age stopped growing.” Rylee and her family discovered Nemours Children’s Health, Lakeland when Dr. Khoury began working at the practice. “We followed our wonderful orthopedic specialist to Nemours,” says Allison. At Nemours Children’s, they’ve connected with an expert team of specialists that have become like family. “We have thoroughly […]

OI Awareness Week: The Benyo Family

When Carrie Benyo’s femur broke at just eight weeks old, her family wasn’t surprised. Osteogenesis Imperfecta (OI) ran in their family, and Carrie quickly became familiar with the challenges that came with it—multiple fractures and the need for specialized care. So when her daughter, Vaeda, was born, Carrie didn’t wait for the first fracture to seek answers. Through cord blood testing at birth, Vaeda was diagnosed with OI Type 1 when the results came back just four weeks later. Determined to find the best care for her daughter, Carrie discovered Nemours Children’s Hospital, Delaware, a nationally recognized leader in OI treatment. “I wanted the best specialists I could find for her,” shares Carrie. What started as a search for Vaeda’s care soon became a turning point for Carrie, too. “When they said they could treat me too I started seeing them as well. Before that I did not have routine […]

New Beginnings: Brooke’s Story

Brooke knows firsthand the challenges of living with back pain. As a dedicated gymnast, she had always been active and driven, but last fall, her world shifted when lingering pain from a back injury turned into something much more debilitating. “My back pain heavily influenced my everyday life,” Brooke shared. “I had to quit gymnastics and was in pain all the time. I couldn’t go an hour without some sort of pain or ache throughout my back.” The search for answers was anything but easy. From August to November, Brooke and her family visited multiple doctors, only to leave each appointment without a diagnosis. Their frustration continued until September, when they found Dr. Shah at Nemours Children’s Hospital, Delaware. “He immediately knew what was wrong and how to address it,” shares Brooke. “No other doctor had been able to at that point.” Dr. Shah diagnosed Brooke with spondylolysis, a condition […]

Changing the Trajectory: Haley’s Story

At 17 years old, Haley is already a seasoned competitor on the golf course, but her path to success hasn’t been without challenges. Diagnosed with adolescent idiopathic scoliosis at age 12, Haley’s journey brought her to Nemours Children’s Health, Winter Garden, where she found the care and support she needed to thrive. It all started in 6th grade when Haley’s trainer noticed that one side of her back was higher than the other during a routine assessment at a sports-specific gym. A visit to her pediatrician and an X-ray confirmed a 34-degree curve in her spine. Initially, treatment included wearing a nighttime back brace from 6th to 9th grade, but the curve progressed to 52 degrees over the next two years, requiring spinal fusion surgery. By the time she started high school, Haley started experiencing back pain, which impacted her sleep and daily life—and, more importantly, her golf game. “The […]

Standing Tall: K’den’s Story

At the age of 16, elite basketball player K’den faced the challenge of scoliosis head-on, with the support of Nemours Children’s Hospital, Delaware, and the expertise of Dr. Suken A. Shah. “I was experiencing rib pain, and I didn’t know why,” K’den recalls. After a week of difficulty with walking prompted an emergency room visit, K’den quickly found that scoliosis was the cause of his pain. For K’den, Nemours Children’s has always been a familiarity. “I have been a long-time patient,” he shares. “The way they’ve helped me throughout my life has been amazing.” At a young age, K’den received an asthma diagnosis, marking the beginning of his journey as a patient at Nemours Children’s Health. “I was in and out of the hospital seemingly every two weeks because I was struggling to breathe,” says K’den. “During an Emergency Room visit at Nemours Children’s, an X-ray was taken of my […]

A Journey with Scoliosis and Chiari Malformation: Carter’s Story

When he was 9 months old, Carter’s parents began to notice something unusual about their son’s posture. His torso seemed to be veering in a different direction while standing upright. Concerned, they sought answers from Carter’s pediatrician, who referred them to pediatric orthopedic surgeon Dr. Suken Shah, Division Chief of the Nemours Spine and Scoliosis Center, and the Shands/MacEwen Endowed Chair of Orthopaedic Surgery at Nemours Children’s Hospital, Delaware. Here, Carter received a diagnosis of Early Onset Scoliosis and Chiari malformation. Scoliosis is a condition where the vertebrae in the spine form a curved line instead of being straight. Larger curves can lead to joint damage, arthritis, and pain, often requiring treatment such as back braces or surgery. Chiari malformation occurs when the cerebellum pushes downward through the foramen magnum, the opening at the base of the skull. It can cause symptoms such as headaches, balance issues, and numbness. Sometimes, […]

A New Little Man: Joshua’s Story

Joshua, now 6 years old, was diagnosed with SMA Type 1 while still in utero. This condition, characterized by muscle weakness and atrophy, led to neuromuscular scoliosis, which was first observed when he was about 11 months old. He currently receives treatment from Nemours Children’s Hospital, Florida. For the first few years of his life, Joshua’s condition was a constant battle. “Joshua wore a back brace for at least 4.5 years, 24/7, with breaks only for bathing,” recalls his grandmother, Claudia. The brace was necessary to manage his scoliosis, but it made sitting up uncomfortable and exacerbated respiratory issues common in children with SMA. “Every cold or flu he caught turned into a hospital stay and intubation on several occasions,” shares Claudia. “SMA can cause respiratory distress, but the fact that Joshua’s lungs were restricted from growth because of scoliosis made it so much worse.” A pivotal moment in Joshua’s […]

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