Parents shocked when all 4 daughters diagnosed with the same rare brain disorder: ‘You’ve got to be kidding’

When doctors diagnosed their youngest daughter with Chiari malformation, Paul and Ashlee Chiari malformation had no idea it would become a long medical journey that would eventually include four of their six sisters.

What began as a confusing search for answers turned into a remarkable story of faith, family, and healing.

The first signs of Chiari malformation

From the moment she was born, Austyn seemed different. She cried often, slept very little, and struggled to find comfort.

As she grew, her parents noticed mild developmental delays and tremors. Nothing seemed to help.

An MRI finally provided the answer that changed everything.

“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 told CBS News.

The results showed that a part of Austyn’s brain had slipped into her spinal canal, blocking the flow of spinal fluid.

Doctors explained that Chiari malformation occurs when the brain’s lower part is too large for the skull, creating pressure on the spinal cord that can lead to headaches, nerve pain, and even paralysis.

For Ashlee, the diagnosis was terrifying. She had never heard of the condition before.

The family soon learned that Austyn would need brain surgery. Traveling three and a half hours to each medical appointment while caring for five other children became overwhelming.

A turn in their medical journey

The family traveled from West Virginia to New York City to meet pediatric neurosurgeon Dr. Jeffrey Greenfield at NewYork-Presbyterian Hospital.

He performed delicate surgery to remove part of Austyn’s skull, giving her brain more room and allowing the spinal fluid to flow again.

The change was almost immediate. Austyn smiled, laughed, and moved without pain for the first time in her life.

“When we did the follow-up with Dr. Greenfield, I told him, ‘You gave me her laugh.'”

It was a decisive moment in their medical journey, one that reminded them of the far-reaching impact of hope and persistence.

Another Chiari malformation diagnosis shocks the family

Just five days after Austyn came home from the hospital, their 3-year-old daughter Amelia began showing strange symptoms.

Doctors first suspected Lyme disease, but imaging revealed something unexpected — Amelia also had Chiari malformation and a tethered spinal cord, a rare combination seen in only 5% of patients.

The Higginbothams were heartbroken but determined. They flew back to New York for another surgery.

The experience felt hauntingly familiar for Paul. Waiting through Amelia’s operation was, as he described, “just as nerve-wracking as the first time.”

Thankfully, Amelia’s recovery was quick, but the family’s fears deepened.

When their seven-year-old daughter Aubrey began suffering from infections and sudden mood changes, Ashlee started to see a painful pattern.

While driving one day, realization struck her — Aubrey needed an MRI too. The results confirmed what she feared: another Chiari malformation and a tethered spinal 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.”

Less than a month after Amelia’s surgery, Aubrey was in the operating room.

Four sisters, one rare condition

Before the family could process everything, their 11-year-old daughter, Adalee, began experiencing severe leg pain.

They had assumed it was just growing pains, but the imaging showed otherwise.

Adalee also had Chiari malformation and a tethered spinal cord — making her the fourth child in the family to be diagnosed.

“It was such a blur of ‘You’ve got to be kidding,'” Ashlee said. The family could hardly believe what was happening.

Dr. Greenfield, who performed all four surgeries, explained that only around 10% of Chiari malformation cases are genetic, calling this cluster of four children “unbelievably rare.”

Despite the odds, each of the sisters recovered remarkably well.

Adalee’s pain disappeared, and she soon joined her school dance team — a beautiful sign of healing after years of discomfort.

Finding light again after Chiari malformation

Two years later, Austyn underwent a routine follow-up surgery in February 2025, a common step for young patients who had early decompression procedures.

Once again, she recovered with strength and resilience.

Today, the Higginbotham household looks and feels different. Laughter fills their home again.

“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.”

From endless hospital visits to a home filled with laughter, the Higginbothams’ story is more than just a tale of survival — it’s a portrait of faith, love, and the power of never giving up.

Their medical journey through this rare family diagnosis proves that hope can shine brightest in the darkest moments.

Watch the CBS News video to see how this family’s journey with Chiari malformation turned into an inspiring story of hope and healing.