Paul and Ashlee Higginbotham knew what was and wasn’t normal for their kids. As the parents of six, they had seen a lot of illnesses and tantrums. But they were baffled by the behavior of their youngest daughter, Austyn.
Austyn was “just not happy” and “never content,” Ashlee said. As an infant, she never slept and cried constantly. She was “never smiling, never laughing,” the toddler’s mother said. She had mild developmental delays and a tremor. At 18 months old, genetic testing found 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 bulges out of the opening where the skull joins the spinal cord, said Dr. David Harter, director of pediatric neurosurgery at NYU Langone. It puts pressure on both the brain and spinal cord, and can cause symptoms like limb weakness, difficulty breathing, scoliosis, headaches and nerve pain, Harter said. If left untreated, it can cause lifelong pain and problems like paralysis and nerve damage.
Most Chiari malformation patients are born with it. The rare condition affects 1 in every 2,000 people, he said, and has no clear cause. Ashlee had never heard of it.
The Higginbotham sisters. / Credit: Paul and Ashlee Higginbotham
“That moment 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 said.
“Trying to hold it together”
More tests found that Austyn had severe compression in her spine and a spinal fluid blockage. She would need brain surgery.
“Life doesn’t stop. We had five other kids, their lives were still moving, and we were trying to hold it together but we’re terrified,” Ashlee said. “We were traveling three and a half hours away for MRIs, for bloodwork, for all these different specialists. Now we need brain surgery? Life was chaos.”
The Higginbothams traveled from West Virginia to New York City to seek care from Dr. Jeffrey Greenfield, a pediatric neurosurgeon at NewYork-Presbyterian Hospital. In most cases, a surgeon would delicately decompress the brain with a combination of elevating muscle, drilling bone and expanding the dura, the sac surrounding the brain, he said.
A graphic showing how Chiari malformation can appear. / Credit: Conquer Chiari
For very young patients, like Austyn, surgeons may only remove some of the bone. Both procedures are meant to give the brain the necessary space and to restore the flow of spinal fluid, Greenfield said.
Austyn underwent surgery in March 2023. 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 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,” Ashlee recalled. “When we did the follow-up with Dr. Greenfield, I told him, ‘You gave me her laugh.'”
The Higginbothams were relieved to find light at the end of the tunnel. But just days later, their world would be rocked again.
Austyn Higginbotham after surgery. / Credit: Paul and Ashlee Higginbotham
“Just as nerve-wracking as the first time”
The Higginbothams took Austyn to a local follow-up appointment five days after returning from New York. They also took Amelia, then 3, because they feared she was showing symptoms of Lyme disease after a recent tick bite. Imaging showed Amelia also had Chiari malformation, as well as a tethered spinal cord.
A tethered cord is seen in about 5% of Chiari malformation patients, Greenfield said. The condition occurs when the spinal cord becomes abnormally attached to surrounding tissue, including bones, muscle or skin. Amelia would need the Chiari malformation surgery, as well as a procedure to snip the tether. The Higginbothams returned to New York and Greenfield completed both procedures in October 2023.
Amelia Higginbotham with Dr. Jeffrey Greenfield. / Credit: Paul and Ashlee Higginbotham
Sitting in the waiting room was “just as nerve-wracking as the first time,” Paul said.
“It feels like days that you’re just sitting there, waiting to see what the outcome is,” he said.
Like Austyn, Amelia recovered quickly, but the hits kept coming. Aubrey, then 7, was moody and had frequent urinary tract infections. One day, Ashlee realized her symptoms were familiar.
“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 said. “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.”
Sure enough, Aubrey had both Chiari malformation and a tethered spinal cord. Less than a month after Amelia’s surgery, the Higginbothams were back in Greenfield’s office.
Aubrey Higginbotham and Dr. Jeffrey Greenfield. / Credit: Paul and Ashlee Higginbotham
“You’ve got to be kidding”
Aubrey’s operation in November 2023 went well, and soon she was back to the happy child her parents recognized.
But the rollercoaster wasn’t over yet. Adalee, then 11, had complained of leg pain for years, but her parents had always believed it was growing pains. In sixth grade, the ache became so severe that she spent most of her free time in bed. As her symptoms escalated, the Higginbothams took her for imaging. They showed the same thing as her younger siblings: Chiari malformation and a tethered spinal cord.
“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?”
About 10% of Chiari malformation cases have a genetic link, Greenfield said, but it’s most common to see that connection between a parent and child. He felt “a little bit of disbelief” as the Higginbotham diagnoses kept coming. He said that the couple learning more about Chiari malformations, tethered cords and their various symptoms helped put the pieces together.
Greenfield decided to operate on Adalee’s cord, which was causing her pain, but not the malformation. Harter said that if a Chiari malformation is not causing symptoms, doctors will observe it and wait for it to cause issues before operating. Adalee recovered from the March 2025 operation and went on to join her school’s dance team, Ashlee said.
The Higginbotham sisters. / Credit: Paul and Ashlee Higginbotham
“The most amazing gift”
The Higginbothams’ eldest two children were screened for Chiari malformations, and do not have the condition, their parents said. Austyn underwent a successful follow-up surgery in February 2025. Higginbotham said about 20% of children who have the minimal operation need a second procedure.
Now, the family is enjoying their “new normal,” Ashlee said. The house is full of laughter and smiles. The kids — Austyn, 4, Amelia, 6, Aubrey, 9, and Adalee, 12 — are active and happy. Some of the girls still have occasional symptoms or pain, which Greenfield said is common in older children whose Chiari malformations require surgery. It’s nothing like before, the Higginbothams said.
It is a relief, Ashlee said, to finally see her children healthy.
“(Dr. Greenfield) gave us our family back, and that is the most amazing gift anyone could get,” 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 we are where we are today.”
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