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A family from Saint Albans, West Virginia, is grappling with a devastating diagnosis after four of their six daughters were found to have a rare and incurable brain condition known as Chiari malformation. The diagnosis followed a series of significant medical interventions initiated by their mother, Ashlee Higginbotham, who noticed troubling symptoms in her youngest daughter, Austyn.
In early 2023, Ashlee observed that Austyn, then just 18 months old, was experiencing severe tremors and difficulty walking. Concerned about her daughter’s condition, she sought medical advice, leading to genetic testing that confirmed her suspicions. Austyn was diagnosed with Chiari malformation, a condition where brain tissue extends into the spinal canal, alongside a spinal fluid blockage and compression of the spinal cord.
The Higginbotham family made the journey to New York, where they consulted with Dr. Jeffrey Greenfield, a pediatric neurosurgeon at NewYork-Presbyterian and Weill Cornell Medicine. In March 2023, Austyn underwent successful brain surgery to alleviate her condition. However, the family’s ordeal was far from over.
Shortly after Austyn’s surgery, the family discovered that their three-year-old daughter, Amelia, also had Chiari malformation, compounded by a tethered spinal cord. According to the Cleveland Clinic, this condition occurs when the spinal cord abnormally attaches to the spinal canal, which can lead to restricted blood flow and various neurological symptoms. In October 2023, Amelia underwent surgery for both her Chiari malformation and tethered cord.
As the family continued to confront these challenges, they learned that their seven-year-old daughter, Aubrey, similarly required surgery for Chiari malformation and a tethered cord. The emotional toll of repeatedly sending their children into surgery was profound. “It’s a heartbreak I can’t even describe,” Ashlee said. “It never gets easier to send them into surgery. It never hurts less no matter how many times we do it.”
By March 2024, the family’s 11-year-old daughter, Adalee, was diagnosed with Chiari malformation and underwent surgery for her tethered cord, although the malformation itself was not causing symptoms at that time. Just as Austyn’s initial symptoms returned, requiring a second operation, the family found themselves in a seemingly endless cycle of medical emergencies.
Dr. Greenfield highlighted the rarity of their situation, noting, “Chiari malformation is rare to begin with, occurring in about one out of every 1,000 people. Four sisters having it is almost unheard of, and something I’ve never encountered in my career.” He emphasized the importance of each girl’s individual recovery and encouraged optimism for a normal childhood following successful surgeries.
Despite the successful interventions, the children still experience lingering side effects and require ongoing medical care. The family must travel approximately nine hours to New York or three and a half hours to Cincinnati Children’s Hospital for regular checkups. Ashlee explained that they see a range of specialists, including experts in neurology, hematology, and psychology, to manage the girls’ complex health needs.
The Higginbotham family’s journey underscores the profound impact of rare medical conditions on both individuals and families. As they navigate this challenging path, they remain hopeful for the future and the potential for their daughters to lead fulfilling lives after their surgeries.
