Months of nonstop crying finally led to a rare diagnosis in their baby — but what awaited three more daughters devastated the family
Parents can tell something is wrong with their child long before they even have a name for it. A couple, Paul and Ashlee Higginbotham, who had raised six children, believed that they understood what typical childhood illnesses look like. However, with their youngest daughter, Austyn, something felt different and unsettling. Since infancy, Austyn looked constantly distressed. She rarely slept, cried nonstop, and seemed unable to find comfort. Ashlee realized that Austyn was “never smiling, never laughing,” and as she grew, mild developmental delays and a tremor began to appear. At 18 months old, Austyn’s genetic testing answered all her mother’s doubts as she had a rare neurological condition, reported CBS News on October 25, 2025.
Ashlee admitted, “That moment when Austyn's MRI results came up on my screen, and we read the diagnosis of Chiari malformation – that was the moment our world was flipped upside down.” After further tests, the doctors found severe spinal compression and a blockage of spinal fluid, which meant that Austyn had to undergo brain surgery. “Life doesn't stop. We had five other kids, their lives were still moving, and we were trying to hold it together, but we're terrified,” Ashlee said. “We were traveling three and a half hours away for MRIs, for bloodwork, for all these different specialists. Now we need brain surgery?”
The family traveled from West Virginia to New York City, where pediatric neurosurgeon Dr. Jeffrey Greenfield at NewYork-Presbyterian Hospital took over Austyn’s care. The surgery, depending on age and severity, required the removal of bone, which meant elevating muscle or expanding the dura to restore spinal fluid flow. In March 2023, Austyn underwent surgery. Ashlee noticed immediate changes; however, it was short-lived. She was ready to go. She was trying to get out of bed. 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,” Ashlee remembered. “When we did the follow-up with Dr. Greenfield, I told him, 'You gave me her laugh.'”
But just after five days of returning home, Austyn had a follow-up appointment alongside her sister Amelia, who was three years old at the time. Amelia was being checked after a tick bite, but examination revealed something devastating. Amelia was also diagnosed with Chiari malformation along with a tethered spinal cord. She required surgery for both conditions, which was done in October 2023 by Dr. Greenfield. Paul recalled the experience to be “just as nerve-wracking as the first time.”
Just when Amelia recovered, the then 7-year-old Aubrey became moody and suffered frequent urinary tract infections. This time, Ashlee recognized the symptoms. “I remember driving down the road, and it just clicked in my head. I was like 'Oh my gosh, I need to get an order for an MRI. She needs to be checked for a tethered cord.'”
Same pattern, same symptoms, one more surgery. In November 2023, Aubrey, too, underwent an operation. The string of bad news did not stop there. Their then 11-year-old Adalee complained of leg pain for years, which her parents believed was growing pains. By sixth grade, the pain became debilitating. Imaging confirmed what the family feared: Chiari malformation and a tethered spinal cord. Ashlee said, “It was such a blur of 'You've got to be kidding.' You hear of people having one or two kids, but four?” Around 10% of Chiari cases have a genetic link, but it was rare to see multiple siblings affected. In March 2025, Adalee underwent surgery and later joined her school’s dance team. Currently, their two eldest children remain unaffected. Austyn, however, required a second surgery in February 2025, reported the outlet, adding that only about 20% of children face another surgery.
Chiari malformation develops when part of the brain extends beyond the skull and presses into the space where it connects to the spinal cord, Dr. David Harter, director of pediatric neurosurgery at NYU Langone, told the outlet. Harter explained that the pressure can affect both the brain and spinal cord, leading to weakness, breathing difficulties, scoliosis, headaches, and nerve pain. The condition, if left untreated, can result in lifelong pain, paralysis, and nerve damage. The family is adjusting to a “new normal.” Ashlee, sharing that Austyn, 4, Amelia, 6, Aubrey, 9, and Adalee, 12, are doing well, said, “It is a relief.” Expressing gratitude towards Dr. Greenfield, she said that he “gave us our family back, and that is the most amazing gift anyone could get.”
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