Paul and Ashlee Higginbotham, parents of six children, were well-acquainted with the ups and downs of parenting. However, they found themselves perplexed by the behavioral issues exhibited by their youngest daughter, Austyn. Austyn was persistently unhappy and seemed never to be content, as her mother Ashlee described. From infancy, she cried excessively and rarely smiled or laughed. Along with experiencing mild developmental delays and a tremor, Austyn's condition led her parents to seek answers.
At just 18 months old, genetic testing revealed that Austyn suffered from a condition known as Chiari malformation. This rare neurological disorder occurs when the lower part of the brain does not fit properly inside the skull, causing it to bulge out where the skull meets the spinal cord. Dr. David Harter, the director of pediatric neurosurgery at NYU Langone, explained that this condition exerts pressure on both the brain and spinal cord, potentially leading to severe symptoms such as limb weakness, difficulty breathing, scoliosis, headaches, and nerve pain. If left untreated, Chiari malformation can result in lifelong complications, including paralysis and nerve damage.
With approximately 1 in every 2,000 individuals affected by this condition, Ashlee had never encountered it before. She recounted the moment when Austyn's MRI results confirmed the diagnosis, saying, "That was the moment our world was flipped upside down."
Further tests indicated that Austyn was experiencing severe spinal compression and a blockage of spinal fluid, necessitating brain surgery. "Life doesn't stop," Ashlee reflected. "We had five other kids; their lives were still moving, and we were trying to hold it together, but we were terrified." The family traveled over three and a half hours to New York City for Austyn’s surgery, led by Dr. Jeffrey Greenfield, a pediatric neurosurgeon at NewYork-Presbyterian Hospital.
In most cases, the surgical procedure involves delicately decompressing the brain by elevating muscle, drilling bone, and expanding the dura, the protective sac surrounding the brain. For young patients like Austyn, surgeons might only need to remove some of the bone to provide the brain with adequate space and restore spinal fluid flow. Austyn's surgery took place in March 2023, and her transformation post-surgery was remarkable. Ashlee noted, "When she woke up, it was like a different child. She was smiley and ready to go." The pain that had shadowed Austyn's early years seemed to vanish, leaving the family hopeful.
Just days after Austyn's surgery, the Higginbothams faced another challenge. During a follow-up appointment, they also brought along their three-year-old daughter, Amelia, who was exhibiting symptoms after a tick bite, raising concerns for Lyme disease. However, imaging revealed that Amelia also had Chiari malformation and a tethered spinal cord. A tethered cord is a rare condition where the spinal cord becomes abnormally attached to surrounding tissues, affecting roughly 5% of Chiari malformation patients. As a result, Amelia would need surgery for both conditions.
The Higginbothams returned to New York for Amelia's surgery, which was performed successfully in October 2023. Paul remarked that waiting in the hospital felt just as nerve-wracking as it had the first time. Fortunately, Amelia also recovered swiftly, bringing a sense of relief to the family.
However, their challenges were far from over. Seven-year-old Aubrey began showing signs of moodiness and recurrent urinary tract infections. Ashlee had an epiphany while driving, realizing Aubrey's symptoms mirrored those of her younger siblings. After requesting an MRI, the diagnosis confirmed that Aubrey also had Chiari malformation and a tethered spinal cord. In November 2023, Aubrey underwent surgery, which also went well, restoring her cheerful demeanor.
Meanwhile, eleven-year-old Adalee had been suffering from leg pain for years, initially dismissed as growing pains. As her symptoms escalated, imaging revealed she too had Chiari malformation and a tethered spinal cord. The couple was stunned to learn that four of their children were affected by this rare condition. Dr. Greenfield noted that approximately 10% of Chiari malformation cases have a genetic connection, often seen between parents and their children.
Adalee underwent a separate procedure in March 2025, focusing on her tethered spinal cord, which was causing her pain but not the malformation itself. Following her recovery, Adalee joined her school's dance team, marking a triumphant return to her active lifestyle.
The Higginbothams' two eldest children were screened for Chiari malformations and confirmed to be unaffected. Austyn had a successful follow-up surgery in February 2025, with Dr. Greenfield advising that about 20% of children who undergo minimal operations may require a second procedure.
Today, the Higginbotham household is filled with laughter and joy. Their children—Austyn, 4, Amelia, 6, Aubrey, 9, and Adalee, 12—are thriving and happy. While some of the girls still experience occasional symptoms, it is a far cry from the struggles they once faced. "It is a relief to finally see my children healthy," Ashlee expressed. "Dr. Greenfield gave us our family back, and that is the most amazing gift anyone could get." The family remains grateful for their journey, which has led them to a newfound sense of normalcy and happiness.
