11/07/2025
Post from NewYork-Presbyterian Hospital w/ links to both CBS News & People Magazine’s articles about our family, our girls, & their medical journeys w/ Chiari Malformation & Tethered Spinal Cord…💜💚
When Paul and Ashlee Higginbotham first noticed unusual irritability, mild developmental delays, and a tremor in their baby girl, Austyn, it was the beginning of a health journey that would lead to four of their daughters being diagnosed with the same rare brain condition: Chiari malformation, an abnormality that causes brain tissue to press down through an opening at the base of the skull and into the upper spinal canal, creating pressure on the brain and spinal cord that causes symptoms like limb weakness, headaches, and nerve pain.
Austyn was 18 months old when a genetic test revealed her diagnosis. After learning that she required brain surgery, her family traveled from West Virginia to seek help from Dr. Jeffrey Greenfield, a pediatric neurosurgeon at of Children’s Hospital of New York. In March 2023, he performed a procedure to give Austyn’s brain more space and restore the normal flow of spinal fluid. When she woke up from the surgery, it was clear to her parents that she was finally out of pain. "When we did the follow-up with Dr. Greenfield, I told him, 'You gave me her laugh," said Ashlee.
In the two years that followed, Ashlee and Paul noticed symptoms in three of Austyn’s sisters — 3-year-old Amelia, 7-year-old Aubrey, and 11-year-old Adalee — and each received a diagnosis of Chiari malformation and tethered spinal cord, a related issue that occurs when the spinal cord becomes attached to surrounding tissue. Dr. Greenfield performed surgery on Amelia in October 2023, Aubrey in November 2023, and Adalee in March 2025. Austyn also underwent a successful follow-up surgery in February 2025.
While about 10% of Chiari malformation cases have a genetic link, Dr. Greenfield said it was extremely surprising to have four siblings diagnosed with the condition. Today, the girls are all active and thriving. "Dr. Greenfield gave us our family back, and that is the most amazing gift anyone could get," Ashlee said.
Read more about their incredible story, which has been featured by:
CBS News: https://nyphosp.co/3Jz2XaL
People: https://nyphosp.co/43jPFWb
Columbia University Irving Medical Center, Weill Cornell Medicine
