 "Rare brain disorder found in four sisters: Doctors call it extraordinary")
In a rare medical phenomenon, four sisters from West Virginia — Austyn, Amelia, Aubrey, and Adalee Higginbotha, have all been diagnosed with Chiari malformation. It is a structural defect in the skull that affects how the brain sits and functions. Doctors have described the case as extremely unusual, given that such clustering in one family is exceptionally rare.
What is Chiari malformation?
According to the Cleveland Clinic, Chiari malformation (CM) occurs when part of the brain, known as the cerebellum, extends into the spinal canal through an opening at the base of the skull (foramen magnum). As per Dr David Harter, director of pediatric neurosurgery at NYU Langone, this happens when the lower portion of the brain doesn’t fit properly within the skull. This can block the normal flow of cerebrospinal fluid and put pressure on the brain as well as the spinal cord.
The condition is often congenital (condition or trait that is present at birth) but may not show symptoms until later in life. Common signs include:
- Severe headaches – especially when coughing or straining
- Dizziness
- Balance problems
- Muscle weakness
- Numbness in the limbs
- Heart palpitations
- Difficulty falling asleep and chronic fatigue.
Some cases also involve tethered spinal cords, where the spinal cord is abnormally attached, causing restricted movement.
Higginbotham sisters’ story
The family’s journey began when their youngest daughter, Austyn, started showing worrying symptoms as a baby such as constant crying, poor sleep, tremors, and developmental delays. At 18 months, she was diagnosed with Chiari malformation and spinal compression, requiring surgery to relieve pressure and restore fluid flow. Also Read: Men get breast cancer too, but most find out far too late, say doctors
Soon after, her sister Amelia, aged three, was diagnosed with the same condition and a tethered spinal cord. She underwent two surgeries in October 2023. Then, Aubrey, aged seven, developed similar symptoms and had surgery a month later, in November 2023. The eldest affected sister, Adalee aged 11, had struggled with leg pain and mobility issues for years before being diagnosed. Her surgery was performed in March 2025.
The girls have since recovered well, with their mother noting that Austyn “was trying to walk, smiling, full of energy” shortly after surgery. The two elder kids were also tested, and did not have the condition.
Dr Jeffrey Greenfield, pediatric neurosurgeon at New York-Presbyterian Hospital, who treated the sisters, described the occurrence as “extraordinary”, noting that only about 10 per cent of Chiari cases have a known genetic link, and it is even rarer for several siblings within the same family to be affected.
The road to recovery
Treatment depends on the severity of symptoms and the level of pressure on the brain and spine. In serious cases, decompression surgery is performed to remove a small portion of bone at the skull base, helping normalise fluid flow. According to US-based Cleveland Clinic, many patients experience significant relief post-surgery, though some may need follow-up procedures.
All four Higginbotham sisters are now recovering under regular medical supervision. Early detection and intervention have been crucial in improving their outcomes. Without treatment, Chiari malformation can lead to chronic pain, nerve damage, or paralysis.
Why this case matters
This rare case underscores the importance of awareness and early diagnosis. Multiple siblings being diagnosed with the same structural brain defect highlights the potential genetic factors behind Chiari malformation.
Doctors recommend that families with one diagnosed child consider screening siblings if symptoms appear. Recognising early warning signs such as persistent headaches, neck pain, or motor issues can make a life-changing difference.
The Higginbotham family’s experience serves as both a medical mystery and a hopeful reminder: with timely diagnosis and specialist care, children with Chiari malformation can recover and live normal lives.