A West Virginian family faces a rare medical ordeal as four sisters are diagnosed with Chiari malformation, a condition that can cause paralysis. Learn about their journey through diagnosis, surgeries, and recovery.
In a rare and heartbreaking medical ordeal, four sisters from West Virginia were diagnosed with the same condition—Chiari malformation—a disorder that can cause paralysis if left untreated. The Higginbotham family’s nightmare began when their youngest daughter, Austyn, started showing troubling symptoms at a young age.
A Family’s Discovery of Chiari Malformation
Paul and Ashlee Higginbotham, parents of six children, had faced many of the common illnesses that children go through, but nothing prepared them for Austyn’s symptoms. From birth, Austyn struggled with constant discomfort, rarely smiling, having difficulty sleeping, and showing noticeable tremors.
When Austyn was only 18 months old, genetic testing revealed the shocking cause of her discomfort: Chiari malformation. This condition occurs when part of the brain doesn’t fit properly inside the skull and pushes into the spinal canal, causing a range of health problems such as weakness, headaches, scoliosis, nerve pain, and even paralysis.
Dr. David Harter, a pediatric neurosurgeon at NYU Langone, explained that if left untreated, Chiari malformation can be debilitating and life-threatening. For Austyn, the condition was blocking spinal fluid and putting pressure on her spine, ultimately requiring brain surgery.
Surgery and Hope: Austyn’s Transformation
The Higginbotham family traveled to New York for Austyn’s surgery with pediatric neurosurgeon Dr. Jeffrey Greenfield. The surgery, which took place in March 2023, marked the beginning of a new chapter for Austyn. “She was smiley. It was like the pain she’d always felt was gone,” Ashlee recalled. “When we did the follow-up with Dr. Greenfield, I told him, ‘you gave me her laugh.'”
However, just days after Austyn’s recovery, the family’s nightmare took another devastating turn. Amelia, the Higginbothams’ three-year-old daughter, was diagnosed with the same condition, along with a tethered spinal cord, which required another round of double surgery.
Aubrey’s Struggles and the Family’s Unfathomable Journey
As the family processed one diagnosis after another, their seven-year-old daughter, Aubrey, began to display troubling symptoms, including mood changes and frequent urinary tract infections (UTIs). Ashlee recalled, “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.'”
The condition had caused Aubrey to transform from a happy, energetic child to someone who seemed to be slipping away, adding to the growing tension within the family. By November 2023, the family had already endured complex surgeries for three of their daughters. But it wasn’t over yet.
The Final Diagnosis: Adalee’s Battle with Chiari Malformation
In a turn of fate that seemed impossible, Adalee, the Higginbotham’s 12-year-old daughter, was diagnosed with Chiari malformation next. Having struggled with severe leg pain for years, Adalee’s condition finally led to the same diagnosis. Ashlee’s reaction was a mix of disbelief and frustration: “It was such a blur of, ‘you’ve got to be kidding,’” she said. “You hear of people having one or two kids [with Chiari malformation], but four?”
Dr. Greenfield, who had treated the other three girls, said it was “unbelievably rare” for four siblings to share the same condition. He noted that only around 10% of Chiari cases are genetic, making the Higginbotham family’s situation one of a kind.
A Family Transformed: The Higginbotham Sisters’ Recovery
After a whirlwind of surgeries and challenges, the Higginbotham sisters—Austyn, Amelia, Aubrey, and Adalee—are now thriving. With the help of Dr. Greenfield and his team, the family has experienced a remarkable transformation. “He gave us our family back, and that is the most amazing gift anyone could get,” Ashlee said.
Today, the four sisters are finally able to live their lives without the constant threat of paralysis looming over them. Though their journey has been filled with pain and uncertainty, the Higginbothams’ story is one of resilience, hope, and the unwavering strength of family.
