Four sisters Diagnosed with Rare Chiari Malformation, Undergo Life-Changing Surgeries
A West Virginia family’s harrowing journey with a rare neurological condition has brought relief and renewed hope after four of their six daughters were diagnosed with Chiari malformation and a tethered spinal cord. Multiple surgeries performed by a leading neurosurgeon have dramatically improved the lives of Austyn, Amelia, Aubrey, and Adalee Higginbotham, offering a testament to medical advancements and the resilience of the human spirit.
Paul and Ashlee Higginbotham, parents of six, believed they had navigated the typical challenges of raising a large family. However, nothing could have prepared them for the perplexing case of their youngest daughter, austyn. “She was just not happy,” Ashlee Higginbotham told CBS News, describing a child who was perpetually discontent. As an infant, Austyn didn’t sleep and cried incessantly. Even as a toddler,she rarely smiled.
After years of seeking answers,Austyn was finally diagnosed with Chiari malformation at age 3. The condition stems from structural problems within the brain and skull.
The most common form, Chiari I malformation, involves the lower part of the brain extending into the spinal canal, putting pressure on the brainstem and spinal cord and obstructing the flow of cerebrospinal fluid. Symptoms, when they appear, can include headaches (often worsened by coughing or straining), neck pain, dizziness, muscle weakness, numbness or tingling in the limbs, vision problems, swallowing difficulties, and even hearing loss.Some individuals may also experience insomnia, clinical depression, and, in cases of associated syringomyelia, problems with coordination, walking, pain, and bladder or bowel control.
Following Austyn’s diagnosis, the family traveled to New York City for specialized care. Further testing revealed severe compression of Austyn’s spinal cord,blocking the flow of spinal fluid. In March 2023, dr. Jeffrey Greenfield performed a decompression surgery.
The transformation following the surgery was remarkable. “She was ready to go,” Ashlee Higginbotham recalled.”She was trying to get out of bed, and she was trying to walk. she was smiley. It was like the pain she’d always felt was gone, and the pain of surgery didn’t match what she’d always felt. She was just ready to run laps around the ICU.” Her mother added, “When we did the follow-up with Dr. Greenfield, I told him, ‘You gave me her laugh.'”
Though, the family’s ordeal was far from over. Just five days after returning home, 3-year-old Amelia fell ill. Initially suspected to be Lyme disease, testing revealed Amelia also had Chiari malformation, accompanied by a tethered spinal cord – a condition where the spinal cord abnormally attaches to surrounding tissue, as defined by the National Institutes of Health (NIH). Amelia underwent two surgeries with Dr. Greenfield in October 2023 and recovered quickly.
shortly after, the couple noticed concerning changes in their 7-year-old daughter, Aubrey, who became unusually moody and experienced frequent urinary infections. Recognizing the pattern, Ashlee Higginbotham insisted on an MRI, which confirmed Aubrey also had both Chiari malformation and a tethered spinal cord.Aubrey underwent surgery in November 2023. “She was our happy kid,and it was like one day we were losing her,” Ashlee said. “After surgery, we got her back.”
The diagnoses continued. Their 11-year-old daughter, Adalee, who had long complained of leg pain, was afterward diagnosed with the same conditions. Adalee underwent surgery in March 2025 and experienced a strong recovery, even returning to her school’s dance team.
Dr. Greenfield explained that while approximately 10% of Chiari malformation cases have a genetic link, it is indeed exceptionally rare for multiple siblings to share the diagnosis. the eldest two children in the Higginbotham family tested negative for the condition.
The Higginbotham family’s story serves as a powerful reminder of the importance of persistent advocacy for children’s health and the life-altering impact of specialized medical care. their journey, marked by fear, uncertainty, and ultimately, hope, underscores the strength of family and the dedication of medical professionals in the face of rare and challenging conditions.
