A family from West Virginia faced a daunting medical ordeal when four sisters were found to have the same rare brain condition, which has the potential to cause paralysis.
Paul and Ashlee Higginbotham, parents of six children, believed they had encountered every childhood illness possible until their youngest, Austyn, began exhibiting unusual symptoms.
From birth, Austyn was ‘just not happy’ and ‘never content’. She struggled to sleep, rarely smiled, and exhibited noticeable tremors.
When she was just 18 months old, genetic testing uncovered that she had developed Chiari malformation. This disorder occurs when a part of the brain does not fit properly inside the skull, pressing into the spinal canal.
Dr. David Harter, who is the director of pediatric neurosurgery at NYU Langone, states that the condition can lead to weakness, headaches, scoliosis, nerve pain, and even paralysis if not treated.
“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,” Ashlee told CBS News.
Doctors discovered that Austyn’s brain was exerting pressure on her spine and obstructing spinal fluid, necessitating brain surgery.
The Higginbothams made the journey from West Virginia to New York for the operation under the care of pediatric neurosurgeon Dr. Jeffrey Greenfield.
Following the surgery in March 2023, Austyn awoke as a changed child.
“She was smiley. It was like the pain she’d always felt was gone,” Ashlee remembered. “When we did the follow-up with Dr Greenfield, I told him, ‘you gave me her laugh.'”
However, the relief was short-lived, as just five days later, their three-year-old daughter Amelia, initially believed to have Lyme disease, was diagnosed with the same condition and a tethered spinal cord, leading to yet another double surgery.
Soon after, their seven-year-old, Aubrey, began showing changes in her behavior, becoming moody and withdrawn, and experiencing urinary tract infections (UTIs).
“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,'” Ashlee recounted.
“She was our happy kid, and it was like one day she woke up and was different, like a flip of a switch, and we were losing her. I wish I would have thought of it sooner.”
By November 2023, the three sisters had undergone complex spinal and brain surgeries, yet the family’s challenges were not over.
Their eldest daughter, 11-year-old Adalee, who had struggled with severe leg pain for years, was the next to be diagnosed.
“It was such a blur of, ‘you’ve got to be kidding,'” Ashlee expressed. “You hear of people having one or two kids [with Chiari malformation], but four?”
Dr. Greenfield explained that it is ‘unbelievably rare’ for four siblings to share the same condition, as only about 10 percent of Chiari cases are genetic.
Today, the Higginbotham sisters—four-year-old Austyn, six-year-old Amelia, nine-year-old Aubrey, and 12-year-old Adalee—are flourishing.
“[Dr Greenfield] gave us our family back, and that is the most amazing gift anyone could get,” Ashlee shared.