One mother’s push for routine scoliosis screenings

When 12-year-old Lily Alvarez bent over one evening in April 2024, her older sister noticed an unusual bump on her back. After getting her parents to assess the bump, Lily's mom, Karen Willes, RN, immediately knew that something was wrong.

The next day, Willes took her daughter to Loma Linda University Health to see orthopaedic surgeon, Ronald Roiz, MD, where she learned the shocking news that Lily had a 60-degree spinal curve caused by scoliosis.

Lily with her sister, Exandra.

"Typically, the spine does not have a curvature in the frontal plane," Roiz explains. "A curvature of less than 10 degrees does not progress with growth. Over 10 degrees is considered scoliosis, and the spine can change with growth and beyond."

When scoliosis is discovered early and is progressing, it can be managed with a brace. However, by the time Lily's scoliosis was diagnosed, it was so severe that it could not be stabilized with a brace. Her scoliosis had reached a point where it had begun to affect her lung function.

In addition to the visible curvature, higher rates of back pain, restrictive lung disease, Roiz says that when left untreated, scoliosis can also take a toll on body image and lead to self-esteem struggles and depression. This is particularly present among young women, who represent the majority of surgical cases.

For Lily, surgery was the only option.

The severity of Lily's condition was shocking for Willes, who had always been diligent about taking her daughter to yearly pediatric wellness exams.

"Lily is an active girl with no history of medical problems and has never complained about pain," Willes said. "She was always healthy, and then suddenly we're told she needs a major surgery."

Three months after Lily's scoliosis diagnosis, she underwent a successful 11-level posterior spinal fusion, a procedure where the surgeon operates from the back of the spine to fuse multiple vertebrae together so they can no longer move independently. In Lily's case, 11 vertebrae were fused, creating a single block of bone that changed her mobility so that the spine would no longer bend.

While the surgery is generally safe, Willes was still left wondering how Lily's condition had gone unnoticed for so long.

In many U.S. schools, routine scoliosis screenings have been discontinued after decades of practice. While some states still conduct them, California school districts ended scoliosis screenings in 2016 due to a lack of funding.

For children like Lily, a school screening could have led to an earlier scoliosis diagnosis, potentially avoiding surgery and allowing a non-invasive treatment with a brace instead. But attending school in a California school district, Lily never received a screening.

Read: Identifying scoliosis and debunking common myths

More concerning to Willes than the lack of school screening was the lack of scoliosis testing done during Lily's annual check-ups.

"I asked the pediatrician if there was ever a scoliosis check documented, and there wasn't," Willes said. "That worries me because a 60-degree curve doesn't happen overnight."

Even with a positive outcome, Willes recalled how intense the surgery was, especially for a child. However, Lily was up and walking the very next day.

Four days after the surgery, Lily was discharged from the hospital and returned home to continue her recovery. Due to the nature and severity of the surgery, Lily had limited mobility for nearly a month and needed continuous care from her family -- especially her mother.

"It was like going back to having a newborn again, but a big one," Willes said. "It was around-the-clock care, from managing medications to monitoring her movements.

By the end of the first month, Lily was able to get herself up from the couch and move around independently. Six weeks after her surgery, she returned to school with restrictions, including no heavy lifting and no PE for another month. Now, a year after surgery, Lily is fully recovered and the entire process is behind her.

Read: When a child's spine begins to curve

But for Willes, she still wonders if earlier detection would have allowed Lily's scoliosis to be treated in a non-invasive way.

"Maybe we still would have ended up with surgery," she said. "But if we had known earlier, we could have prepared ourselves and at least tried all the available options."

Lily with members of her care team, Dusti Roberts, Linda Puma, and Susie Gonzalez

Now, Willes has a passion for spreading the importance of scoliosis testing. She stresses that for many adolescents, scoliosis can go unnoticed -- especially for kids who tend to wear baggy clothes -- and many do not show obvious signs until the curve becomes severe.

Even as a nurse, Willes never thought to perform a scoliosis check on Lily herself, trusting instead that the pediatrician would handle it during routine visits.

"Parents need to know the signs and symptoms, and they need to ask their pediatricians, 'Did you do a scoliosis check?' It's OK to advocate for your child," Willes said.

Early scoliosis detection can make a significant difference. While surgery can lead to positive outcomes, as in Lily's case, screenings offer the chance to catch the condition sooner and often manage it without surgery.

For more information on scoliosis in children, contact us at 877-558-6248, or visit our website here. Links to informational videos and other resources can be found at Setting Scoliosis Straight Foundation.