Four sisters from the Higginbotham family in West Virginia—Austyn, Amelia, Aubrey and Adalee — were each diagnosed with a Chiari malformation and underwent neurosurgical intervention in succession.
The Higginbotham family from West Virginia learned about their daughters’ rare neurological condition over the span of about a year. According to a report by CBS News, the discovery began when now four-year-old Austyn, the youngest of the sisters, started showing unusual symptoms including balance issues and tremors. At 18 months old, she never smiled and had few other developmental delays. Later, genetic testing and brain imaging revealed Chiari malformation, a structural defect that causes the lower part of the brain to extend into the spinal canal.
After Austyn’s diagnosis, the family travelled from West Virginia to New York to seek care from pediatric neurologist Dr. Jeffrey Greenfield, at New York-Presbyterian Hospital. She underwent surgery in March 2023 to correct the malformation and most of her issues were solved with the surgery. During the follow up after surgery, they took then 3-year-old Amelia to get her checked for Lyme disease since she had got bitten by a tick. But Amelia was found to have the same condition following episodes of headaches and neck pain and imaging showed she had a tethered cord as well. She underwent and completed her surgeries by October 2023.
Aubrey who was then 7 was next, presenting with moody behaviour and urinary tract infections. She underwent the surgery on November 2023
The eldest among those affected, Adalee who was 11 then, who had earlier complained of leg pain for years, got diagnosed with the same condition and her surgery was completed in March 2025. Two other elder siblings were also checked for the condition and tested negative.
All four sisters eventually required neurosurgical decompression procedures to relieve pressure and restore cerebrospinal fluid flow. Despite the rarity of having multiple siblings with Chiari malformation, doctors reported that all four girls are now recovering well.
A Chiari malformation is a structural defect in the skull and cerebellum (the part of the brain that controls balance) that causes brain tissue to extend into the spinal canal. Normally, the cerebellum and brainstem sit above an opening at the base of the skull (the foramen magnum), but in Chiari malformation the cerebellar tonsils or other brain tissue are pushed below this opening.
This downward extension may result from a skull that is smaller than normal or misshapen, which puts pressure on the cerebellum, brain stem and spinal cord, and can obstruct the flow of cerebrospinal fluid (CSF) — the clear liquid that surrounds the brain and spinal cord.
Symptoms vary depending on the severity of tissue compression and CSF pressure build-up. Some people may have no symptoms. Common symptoms include:
Headache (particularly after coughing, sneezing or straining)
Neck pain
Balance problems or coordination difficulties
Muscle weakness or numbness
Difficulty swallowing, breathing or speaking (in more severe cases)
Curvature of the spine (scoliosis)
Insomnia
Depression
Problems with hand coordination and fine motor skills
Difficulty eating and an inability to gain weight 1
The exact incidence of Chiari malformation is not well known because many cases may go undiagnosed or asymptomatic. Some sources estimate less than 1 in 1,000 people for Type I, but imaging studies suggest it may be more widespread.
In the case of the Higginbotham family, four siblings had the condition, which suggests a possible genetic link, although this is rare. Some literature notes familial clustering though the mechanisms are not fully understood.
When Chiari malformation leads to significant symptoms or complications, surgical intervention may be recommended. One common surgical approach is suboccipital decompression, where part of the skull and sometimes the upper spine is removed or modified to relieve pressure and restore CSF flow.
In the Higginbotham sisters’ case, the family travelled for specialist care and each underwent corrective surgery, often involving spinal decompression and associated procedures (such as addressing a tethered spinal cord).
The Higginbotham family case—four sisters each diagnosed with Chiari malformation—highlights a rare occurrence of sibling clustering of this structural brain-skull disorder.
References
National Institute of Neurological Disorders and Stroke. “Chiari Malformations.” NIH. Accessed October 27, 2025. https://www.ninds.nih.gov/health-information/disorders/chiari-malformations.
Breen, Kerry. “Four Sisters Diagnosed with Same Rare Brain Condition: ‘You’ve Got to Be Kidding’.” CBS News, October 25, 2025. https://www.cbsnews.com/news/chiari-malformation-brain-condition-rare-diagnosis-new-york-presbyterian/.
(Rh/TL)