4 sisters diagnosed with the same extremely rare brain condition that can lead to paralysis
Paul and Ashlee Higginbotham thought they had seen everything as parents of six. But when their youngest daughter, Austyn, began crying nonstop and rarely smiled, they knew something was wrong.
Austyn struggled to sleep and showed early signs of developmental delay. At 18 months, genetic testing revealed she had Chiari malformation — a condition where part of the brain extends into the spinal canal, compressing nerves and causing pain, tremors, or weakness.
Dr. David Harter of NYU Langone explained that Chiari malformation affects about one in every 2,000 people. It often has no clear cause and can lead to lifelong nerve damage if untreated.
Ashlee recalled the day she saw the diagnosis on the screen. “Our world flipped upside down,” she said.
Further tests revealed spinal compression and a blocked flow of spinal fluid. Austyn needed brain surgery.
“Life didn’t stop,” Ashlee said. “We had five other kids and endless travel for tests. We were terrified.”
The family drove from West Virginia to New York City to meet pediatric neurosurgeon Dr. Jeffrey Greenfield at NewYork-Presbyterian Hospital. He performed a decompression surgery in March 2023 to relieve pressure and restore fluid flow.
When Austyn woke up, her parents were stunned. She smiled, laughed, and wanted to walk immediately. “It was like she’d been freed from pain,” Ashlee said. “Dr. Greenfield gave me her laugh.”
Their relief was short-lived. A few days later, another shock came.
At a follow-up visit, their 3-year-old daughter Amelia was also diagnosed with Chiari malformation and a tethered spinal cord. Both conditions required surgery. In October 2023, Dr. Greenfield operated successfully.
“It was just as nerve-wracking as the first time,” Paul said. “The waiting felt endless.”
Soon after, their 7-year-old daughter Aubrey began showing similar symptoms. An MRI confirmed both Chiari malformation and a tethered cord. Her surgery in November 2023 went smoothly, and she quickly returned to her cheerful self.
But the pattern continued. Their 11-year-old, Adalee, had suffered leg pain for years. Tests showed she too had Chiari malformation and a tethered cord.
“You’ve got to be kidding,” Ashlee recalled saying. “Four daughters with the same rare condition?”
Dr. Greenfield noted that about 10% of Chiari malformation cases are genetic, usually between parent and child, not among siblings. Even he was surprised.
He decided to operate only on Adalee’s tethered cord in March 2025, since her Chiari malformation wasn’t causing symptoms. She recovered well and joined her school’s dance team soon after.
The two eldest Higginbotham children were tested and cleared. Austyn later underwent a second, successful procedure in February 2025, a common follow-up for young patients.
Today, the family enjoys a “new normal.” Their home is filled with laughter again. The sisters — Austyn, 4; Amelia, 6; Aubrey, 9; and Adalee, 12 — are active, playful, and healing.
“Dr. Greenfield gave us our family back,” Ashlee said. “After everything, seeing our girls happy again is the greatest gift we could ask for.”
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