URGENT UPDATE: In a shocking turn of events, four sisters from West Virginia have been diagnosed with the rare brain condition known as Chiari malformation. This development has left their family in disbelief and has propelled them into a whirlwind of medical interventions.
Parents Paul and Ashlee Higginbotham first noticed troubling signs in their youngest daughter, Austyn, who displayed unusual behavior, including constant crying and developmental delays. At just 18 months, genetic testing revealed Chiari malformation, a serious condition where the brain is compressed due to a misalignment with the skull. It affects approximately 1 in every 2,000 people and can lead to severe complications if untreated.
Doctors at NYU Langone confirmed that Austyn’s condition required immediate brain surgery. In March 2023, she underwent a delicate procedure, which her mother describes as life-changing. “When she woke up, it was like the pain she’d always felt was gone,” Ashlee recalled. The family felt a sense of relief, but this was just the beginning of their challenges.
Just days after Austyn’s surgery, the Higginbothams faced another crisis. During a follow-up appointment, they discovered that Amelia, then just three years old, also had Chiari malformation and a tethered spinal cord. This revelation meant Amelia would need the same surgery that saved her sister.
The family traveled back to NewYork-Presbyterian Hospital for Amelia’s surgery in October 2023, where the tension in the waiting room was palpable. “It feels like days that you’re just sitting there, waiting to see what the outcome is,” Paul said. Miraculously, Amelia also recovered well, but the family’s ordeal was far from over.
Soon after, Aubrey, age seven, began showing signs that raised alarms for Ashlee. After a sudden change in demeanor, they sought medical advice, only to find that Aubrey too had Chiari malformation and a tethered spinal cord. “You’ve got to be kidding,” Ashlee said, reflecting on the overwhelming diagnosis for four sisters.
In November 2023, Aubrey underwent successful surgery, and her joyful spirit returned. But the family was still on high alert. Adalee, the oldest at age 11, complained of severe leg pain, which they initially dismissed as growing pains. However, medical imaging confirmed the same diagnosis: Chiari malformation and a tethered spinal cord.
Adalee’s surgery took place in March 2025, and she has since returned to her normal activities, including joining her school’s dance team.
The Higginbothams’ eldest two children were screened and thankfully do not have the condition. As of now, the family is navigating their “new normal,” filled with laughter and joy. Ashlee expressed profound gratitude, stating, “(Dr. Greenfield) gave us our family back, and that is the most amazing gift anyone could get.”
While the children occasionally experience residual symptoms, their quality of life has drastically improved. The Higginbothams’ story serves as a reminder of resilience and the urgent need for awareness of rare medical conditions like Chiari malformation.
Stay tuned for more updates on this remarkable family’s journey as they continue to heal and thrive together.