Paul and Ashlee Higginbotham knew what was and wasn’t for their children. As parents of six children, they experienced many illnesses and temper tantrums. But they were puzzled by the behavior of their youngest daughter, Austyn.
Austin was “just not happy” and was “never happy,” Ashlee said. As a baby, she never slept and cried all the time. She “never smiled, never laughed,” the toddler’s mother said. She had mild developmental delay and tremors. At 18 months, genetic testing revealed she had a genetic condition called Chiari malformation.
The condition occurs when the lower part of the brain does not fit inside the skull and protrudes from the opening where the skull connects to the spinal cord, said Dr. David Harter, director of pediatric neurosurgery at NYU Langone. This puts pressure on the brain and spinal cord and can cause symptoms such as limb weakness, shortness of breath, scoliosis, headaches and nerve pain, Harter said. If left untreated, it can lead to lifelong pain and problems such as paralysis and nerve damage.
Most patients with Chiari malformations are born with it. The rare condition affects 1 in 2,000 people and has no clear cause, he said. Ashlee had never heard of it.
The Higginbotham Sisters. / Authors: Paul and Ashlee Higginbotham
“The moment Austin’s MRI results came up on my screen and we read the Chiari malformation diagnosis, our world was turned upside down,” Ashlee said.
“Trying to keep it together”
More tests revealed that Austyn had severely compressed her spine and had a spinal fluid blockage. She will need brain surgery.
“Life doesn’t stop. We had five more kids, their lives were still moving, and we were trying to keep it together, but we’re scared,” Ashlee said. “We traveled three and a half hours for an MRI, a blood test, all these different specialists. Now we need brain surgery? Life was chaos.”
The Higginbothams traveled from West Virginia to New York to seek care from Dr. Jeffrey Greenfield, a pediatric neurosurgeon at New York Presbyterian Hospital. In most cases, he said, the surgeon would gently decompress the brain by lifting the muscles, drilling the bone and expanding the dura, the sac surrounding the brain.
A graphic showing how a Chiari malformation can occur. / Credit: Conquer Chiari
For very young patients like Austin, surgeons can only remove part of the bone. Both procedures are designed to give the brain the space it needs and restore the flow of spinal fluid, Greenfield said.
Austyn was operated on in 2023. in March When she woke up a few hours later, she was like a different child, Ashlee said.
“She was ready to go. She was trying to get out of bed, she was trying to walk. She was smiling. It was like the pain she’d always felt was gone, and the pain from surgery didn’t match what she’d always felt. She was just ready to run circles around the ICU,” Ashlee recalled. “When we did further tests with Dr. Greenfield, I said to him, ‘You gave me her laugh.’
The Higginbothams were relieved to find the light at the end of the tunnel. But in just a few days, their world will be rocked again.
Austin Higginbotham after surgery. / Authors: Paul and Ashlee Higginbotham
“Same as first-time nerve-wracking”
Five days after returning from New York, the Higginbothams took Austin to a local follow-up meeting. They also took in Amelia, then 3, because they feared she was showing symptoms of Lyme disease after a recent tick bite. The scan showed that Amelia also had a Chiari malformation as well as a tethered spinal cord.
A tethered cord is seen in about 5% of patients with Chiari malformations, Greenfield said. The condition occurs when the spinal cord attaches abnormally to surrounding tissue, including bone, muscle or skin. Amelia will need Chiari malformation surgery as well as a cord clipping procedure. The Higginbothams returned to New York, and Greenfield completed both procedures in 2023. in October
Amelia Higginbotham with Dr. Jeffrey Greenfield. / Authors: Paul and Ashlee Higginbotham
Sitting in the waiting room was “just like the first time,” Paul said.
“It feels like days where you’re just sitting there waiting to see what the outcome is going to be,” he said.
Like Austin, Amelia quickly recovered, but the blows kept coming. Aubrey, then 7, was moody and had frequent urinary tract infections. One day, Ashlee realized that her symptoms were familiar.
“I remember driving down the road and it just clicked in my head. I was like, ‘Oh my God, I need to order an MRI. She needs to be checked to make sure she’s not tethered,” Ashlee said. “She was our happy child and it was like one day she woke up and she was different like a switch and we lost her. I wish I had thought of it earlier.”
Of course, Aubrey had both a Chiari malformation and a tethered spinal cord. Less than a month after Amelia’s surgery, the Higginbothams returned to the Greenfield office.
Aubrey Higginbotham and Dr. Jeffrey Greenfield. / Authors: Paul and Ashlee Higginbotham
“You’ve got to be kidding me”
Aubrey’s Operation 2023 November went well and soon she was back to being a happy child who was recognized by her parents.
But the roller coaster is not over yet. Adalee, 11, had been complaining of leg pain for years, but her parents always thought it was growing pains. In the sixth grade, the pain became so severe that he spent most of his free time in bed. When her symptoms worsened, the Higginbothams took her for imaging. They showed the same thing as her younger siblings: a Chiari malformation and a tethered spinal cord.
“It was like a blur of ‘You’ve got to be kidding me,'” Ashlee said. – Do you hear that people have one or two children, but four?
Greenfield said that about 10% of Chiari malformations have a genetic link, but that link can usually be seen between the parent and the child. He felt “a bit of disbelief” as Higginbotham’s diagnoses kept coming. Learning more about Chiari malformations, tethered cords and their various symptoms helped the couple put the pieces together, he said.
Greenfield decided to operate on Adalee’s umbilical cord, which caused her pain but no birth defect. Harter said if a Chiari malformation is not causing symptoms, doctors will monitor it and wait until it causes problems before operating. Adalee recovered after 2025. surgery in March and joined her school’s dance team, Ashlee said.
The Higginbotham Sisters. / Authors: Paul and Ashlee Higginbotham
“The Most Wonderful Gift”
The Higginbothams’ older two children have been screened for Chiari malformations and do not have the condition, their parents said. in 2025 in February Austin underwent a successful follow-up surgery. Higginbotham said about 20% of children who undergo minimal surgery need a second procedure.
Now the family is enjoying their “new normal,” Ashlee said. The house is full of laughter and smiles. Children – 4 years old. Austin, 6 years old Amelia, 9 years old Aubrey and 12 Adalee – are active and happy. Some girls still have occasional symptoms or pain, which Greenfield says is typical of older children who need surgery for Chiari malformations. It’s nothing like it used to be, the Higginbothams said.
Ashlee is relieved to finally see her children healthy.
“(Dr. Greenfield) gave us his family back, and that’s the most amazing gift he could have received,” Ashlee said. “Some days we weren’t sure how things would ever get better for our girls. … It’s been a whirlwind, but we’re thankful to be where we are today.”
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