Paul and Ashlee Higginbotham from West Virginia said they had never faced anything as alarming as what happened with their youngest child, Austyn. As a baby, she barely slept, cried constantly, and showed little sign of contentment or joy. She also experienced tremors and mild developmental delays.
At 18 months, tests revealed that Austyn had Chiari malformation, a rare condition in which part of the brain extends into the spinal canal. According to Dr David Harter, director of pediatric neurosurgery at NYU Langone, this happens when the lower portion of the brain doesn’t fit properly within the skull. The resulting pressure can cause weakness, breathing issues, spinal curvature, headaches, and nerve pain. Around one in 2,000 people are affected, and the cause is usually unknown, according to a report in CBS News.
Ashlee said she had never heard of the disorder. “When I saw the MRI report and read the diagnosis, that was the moment our world turned upside down,” she said. Further imaging showed severe spinal compression and a blockage of spinal fluid, requiring brain surgery.
“We had five other kids to care for, and everything was moving at once,” she told CBS News. “We were terrified.” The family travelled several hours to see specialists before finally meeting Dr Jeffrey Greenfield at New York-Presbyterian Hospital.
Dr Greenfield explained that surgery involves relieving pressure at the base of the skull by removing bone and expanding the surrounding membrane to allow normal spinal fluid flow. In very young children, only part of the bone is removed.
Austyn’s operation took place in March 2023. Her parents said her recovery was almost immediate. “She was trying to walk, smiling, full of energy,” Ashlee said. “It was like the pain she’d always felt was gone.” At a later appointment, she told Dr Greenfield, “You gave me her laugh.”
Days later, another shock followed. The couple took their three-year-old daughter, Amelia, to the doctor for possible Lyme disease after a tick bite. Tests showed that she too had Chiari malformation, along with a tethered spinal cord — where the spinal cord is abnormally attached to nearby tissue. Dr Greenfield noted that around 5% of Chiari cases have this added complication.
Amelia underwent two operations in October 2023 — one for each issue — and recovered well. “Sitting in that waiting room felt endless,” Paul said.
Soon after, their seven-year-old daughter, Aubrey, began showing mood changes and frequent urinary infections. Ashlee said she recognised the signs. “I just knew she needed an MRI,” she said. The results confirmed both Chiari malformation and a tethered spinal cord. Aubrey had surgery in November 2023 and returned to her usual self shortly after.
Their 11-year-old daughter, Adalee, had complained of leg pain for years. The family thought it was due to growth, but it worsened until she could barely move around. Tests showed the same conditions as her younger sisters. “It was like, you’ve got to be kidding,” Ashlee said. “One child, two children maybe, but four?”
Dr Greenfield said roughly 10% of Chiari cases show a genetic link, typically between parent and child. He called the family’s situation highly unusual. Adalee’s surgery took place in March 2025 to release her tethered cord. Her brain condition did not require immediate intervention.
The two eldest children were screened but did not have the condition. In February 2025, Austyn had a follow-up procedure, which Dr Harter said is required in about one in five children who initially undergo limited surgery.
Now, the family said they were adjusting to a calmer life. Austyn, 4, Amelia, 6, Aubrey, 9, and Adalee, 12, were described as healthy and active, with only minor lingering symptoms.
“Dr Greenfield gave us our family back,” Ashlee said. “Some days we weren’t sure things would ever get better, but now we can finally breathe.”
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