Four sisters were diagnosed with a rare brain condition that can lead to paralysis in a shocking medical anomaly discovered when the youngest daughter of the family began to exhibit worrying symptoms.
Paul and Ashlee Higginbotham, of West Virginia, could consider themselves well versed in the process of nurturing their sick children back to health. Any parent can attest to the idea that kids attract colds and illnesses like flowers attract bees, and the Higginbotham have no less than six children.
Yet they grew worried that something out of the ordinary was afoot when their youngest, Austyn, barely slept, never smiled, and had noticeable tremors. The parents described her as “never content”.
They sought medical advice in a bid to get answers, only for genetic testing – completed when Austyn was 18 months old – revealed she had a condition called Chiari malformation, a disorder that occurs when part of the brain doesn’t fit properly inside the skull, resulting it in pushing into the spinal canal.
Speaking to CBS News, mom Ashlee said: “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.”
According to Dr. David Harter, director of pediatric neurosurgery at NYU Langone, the condition can cause lifelong pain, as well as problems like paralysis and nerve damage, if left untreated.
Since Austyn’s brain was putting pressure on her spine and blocking spinal fluid, she was forced to undergo brain surgery.
“We were traveling three and a half hours away for MRIs, for bloodwork, for all these different specialists,” Ashlee told CBS. “Now we need brain surgery? Life was chaos.”
The family traveled to New York City to seek the help of pediatric neurosurgeon Dr Jeffrey Greenfield. Austyn underwent surgery in March 2023, and it was a resounding success.
Ashlee went as far as to say she was like a different child when she woke up after the op. “She was ready to go. She was trying to get out of bed, she was trying to walk. She was smiley. It was like the pain she’d always felt was gone, and the pain of surgery didn’t match what she’d always felt. She was just ready to run laps around the ICU.
“When we did the follow-up with Dr. Greenfield, I told him, ‘You gave me her laugh.'”
Yet in a cruel and wildly improbable turn of events, the family were to face another trial just five days later. Austyn’s older sister Amelia, then age 3, was taken to see a doctor for what they thought was Lyme disease. The Higginbotham’s were understandably left shocked when she was also diagnosed with Chiari malformation, as well as a tethered spinal cord.
They returned to New York in October 2023, with Dr. Greenfield completing two surgeries to set Amelia’s wrongs to rights.
Not long after, the family’s seven-year-old daughter, Aubrey, began exhibiting symptoms of her own. As per reports, she was moody, withdrawn, and suffering repeated 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.'”
“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.”
It transpired that Aubrey was also suffering from Chiari malformation and a tethered spinal cord, leaving the Higginbothams with no choice but to promptly return to Dr. Greenfield less than a month after Amelia’s surgery.
Aubrey underwent her procedures in November 2023. Thankfully, they were as successful as those performed on her younger sisters, and finally it seemed as though the embattled family could return to a normal life.
That was until daughter Adalee, aged 11, complained of intense pain in her leg. According to CBS News, she’d had discomfort in the area for years, but her parents naturally put it down to growing pains.
When Adalee was in sixth grade, however, the pain became so severe that she was reduced to her bed for most of her free time.
When Paul and Ashlee took her for imaging, they were met with what had become a routine, if not still shocking, diagnosis. Adalee had Chiari malformation and a tethered spinal cord too.
“It was such a blur of ‘You’ve got to be kidding,'” Ashlee said. “You hear of people having one or two kids, but four?”
Dr. Greenfield decided to operate on Adalee’s cord but not the malformation. Dr. David Harter explained that doctors wait for Chiari malformation to cause symptoms before operating on it.
According to Greenfield, it’s “unbelievably rare” for four siblings to be diagnosed with the same condition, as only around 10 percent of Chiari cases are genetic. The Higginbothams’ eldest two children, meanwhile, were screened for Chiari malformations, but do not have the condition.
The Higginbotham sisters are said to be thriving today, with mom Ashlee crediting Dr. Greenfield for his work. “[Dr Greenfield] gave us our family back, and that is the most amazing gift anyone could get,” she said.
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