A Princess's Journey: Overcoming Torticollis at Oklahoma Children's Hospital OU Health

At just 3 years old, Violet is already living up to her royal title. Living on a farm, this vibrant toddler enjoys spending time outdoors with the horses, and her family calls her “the princess.” But Violet's journey hasn't always been one of golden-draped horses and royal treatment.

Born without part of her first vertebrae, Violet faced spinal instability that went undiagnosed for years.

"She's super smart, and she's a princess," her mother, Alexis Eldridge, said. "I've known something was wrong since she was born. She'd had torticollis, and we've been in physical therapy for years."

Torticollis, sometimes called wry neck or twisted neck, is a rare condition that causes involuntary head tilting due to tightened neck muscles or another underlying condition. Often, the condition is caused by a muscular problem that can easily be corrected, but other times, torticollis is due to an infection, a neurological problem or a genetic mutation.

Whether it occurs in babies, children, or adults, torticollis can be treated. As with many conditions, the earlier torticollis is treated, the better the outcome.

The family's search for treatment finally led them in February 2024 to Oklahoma Children’s Hospital pediatric neurosurgeon Dr. Andrew Jea, M.D., Chair of the Department of Neurosurgery at the University of Oklahoma College of Medicine.

“Violet had bony abnormalities at the junction between her skull and top of the spine,” said Dr. Jea. “There were missing bony structures as well as extraneous auto-fusion (where adjacent vertebrae gradually fuse together).

Discovering the Cause of Violet’s Health Issues

Earlier this year, Dr. Jea discovered the underlying cause of Violet's health issues and proposed a surgery that would reposition Violet’s head and neck into a more neutral position, Dr. Jea and his team would place screws, rods and bone grafts to stabilize her skull to the top of the spine.

“The specific condition resulting in Violet’s torticollis and instability is rare,” Dr. Jea said. “There are few pediatric neurosurgeons and surgical teams trained or experienced in the placement of spinal instrumentation into a child as young and as small as Violet worldwide. We are fortunate to have the resources and experience at Oklahoma Children’s Hospital and OU Health to care for children like Violet.”

For Violet's parents, the prospect of such an extensive procedure for their young daughter was understandably daunting. However, the family found reassurance in Dr. Jea's approach.

"Dr. Jea is really great at communication, answering all of our questions and trying to put us at ease with such an extensive surgery," Alexis said.

Successful Surgery & Recovery

In May, Violet underwent the procedure.

“That part of the body has very special qualities associated with it, and her head was not firmly attached to her spine,” Dr. Jea said. “If you watched her before surgery, she had this significant head tilt. So, what we did was do what nature didn't do – provide her stability there with a rod joining the head to the top of her spine.”

Post-surgery, Violet spent several days recovering at Oklahoma Children's Hospital. While the first day after surgery was understandably challenging, Violet's resilience shone through on day two.

"We had a great care team,” Alexis said. “They just helped us really make her comfortable, which is what we wanted. The second day, we got up and out of bed, and she got to go to the playroom at Oklahoma Children’s Hospital. She enjoyed doing that, and that's really what helped speed up her recovery."

The team at Oklahoma Children’s Hospital played a major role in Violet’s healing process, and this team-based approach at ensures that families like Violet's can receive specialized care without leaving the state.

"Nowadays, medicine is a team effort. It's a team sport," Dr. Jea said. "In order to perform complex procedures or to take care of complex special cases like Violet's, you need a team around you, both before the surgery, inside the operating room, and then after surgery."

Long-term Impact of Specialized Care

For Violet and her family, the impact of this care extends far beyond the hospital walls. The surgery has not only improved Violet's quality of life but also significantly reduced her risk of future complications.

"It was really a long time coming, actually getting a diagnosis and being able to help her," said Alexis. “A spinal cord injury for her would have been devastating. Now, there's less risk for injury, which is huge. Thank you, Dr. Jea and the whole team at the hospital. We really had a great experience Oklahoma Children's Hospital improved the life of my child."

For Dr. Jea, Violet and the hundreds of other children who have been treated at Oklahoma Children’s Hospital remind him why he became a surgeon to begin with. His own sister was diagnosed at a very young age with a tangle of abnormal blood vessels in the brain which ruptured.

“She spent many days in the hospital in the ICU,” Dr. Jea said. “She had two surgeries to address the problem, and I was really impressed as a kid by not only the care that my sister got from the neurosurgeon and entire healthcare team, but also how they took care of my family at the same time.”

After watching his own sister receive the care and experience, Dr. Jea made it his life goal to give back in some way.

“That’s why I do pediatric neurosurgery,” Dr. Jea said. “Now, it’s just great to see Violet smile like any 3-year-old and to see her interact with her with their family and play with her baby sister. I love working at Oklahoma Children's Hospital for the opportunity to improve the lives of children through discovery and healing.”

Learn more about comprehensive, multidisciplinary pediatric care at Oklahoma Children’s Hospital or speak to an expert by calling (405) 271-KIDS or visiting OklahomaChildrens.Org