The miracle of the Higginbotham girls: Battling rarest of rare brain disorder together

When Paul and Ashlee Higginbotham welcomed their youngest daughter, Austyn, into their West Virginia home, they never imagined that her first months would be marked by sleepless nights, endless tears, and a mystery that would reshape their entire family’s life.

“She barely slept, cried all the time, and nothing seemed to comfort her,” Ashlee recalled. “I just knew something wasn’t right.”

Doctors eventually discovered that Austyn had Chiari malformation, a rare structural defect in the brain that causes the cerebellum to press into the spinal canal.

Further scans revealed severe spinal compression and a blockage of cerebrospinal fluid — a dangerous combination that required urgent surgery. “When I saw the MRI report, that was the moment our world turned upside down,” Ashlee told CBS News.

In March 2023, under the care of Dr. Jeffrey Greenfield at New York-Presbyterian Hospital, baby Austyn underwent brain surgery. The transformation was almost immediate.

“She was smiling, walking, full of energy,” Ashlee said. “It was like the pain she’d always felt was gone. I told Dr. Greenfield, ‘You gave me her laugh.’” But the relief was short-lived.

Just days later, the Higginbothams took their three-year-old daughter Amelia to the doctor for what they thought was Lyme disease after a tick bite.

To their shock, tests revealed the same Chiari malformation — and an additional condition, a tethered spinal cord, where the spinal cord is abnormally attached to nearby tissue.

Amelia underwent two surgeries in October 2023 and recovered well, but the family was still reeling. “Sitting in that waiting room felt endless,” said Paul.

Then came another blow. Their seven-year-old, Aubrey, began showing subtle symptoms — mood swings, recurring urinary infections, and fatigue. “I just knew,” Ashlee said. “I told them she needed an MRI.”

The scans confirmed both Chiari and a tethered cord. Aubrey had surgery in November 2023 and was soon back to her cheerful self.

And then, incredibly, the pattern repeated. Their 11-year-old, Adalee, who had long complained of leg pain, was diagnosed with the same conditions. “It was like, you’ve got to be kidding,” Ashlee said. “One child, two maybe — but four?”

Dr Greenfield explained that only about 10% of Chiari cases are thought to have a genetic link, often between parent and child. “What we’re seeing in this family is extremely rare,” he said.

Adalee underwent spinal surgery in March 2025, though her brain condition didn’t require immediate treatment. Their two oldest children were screened and found to be free of the disorder.

By early 2025, Austyn needed a follow-up procedure — something that happens in about one in five pediatric cases — but recovered swiftly.

Today, the Higginbotham household is filled with noise and laughter again. Austyn (4), Amelia (6), Aubrey (9), and Adalee (12) are thriving, their surgeries behind them, with only minor lingering symptoms.

“Dr Greenfield gave us our family back,” Ashlee said softly. “Some days, we weren’t sure things would ever get better. But now, we can finally breathe.”