When doctors told the Simpson family their baby would likely not live long, they were talking in months, not decades. But Alex Simpson, diagnosed as an infant with an extremely rare condition called hydranencephaly, celebrated her 20th birthday on November 4, 2025, according to a report by KETV NewsWatch 7.
Her story is not a Hollywood-style miracle, and it is not proof that people can “live without a brain.” Still, it is a real-world case that highlights how much basic life depends on deeper brain structures, and how much scientists still debate when it comes to awareness, sensation, and connection.
A birthday milestone that surprised nearly everyone
Alex was born in Nebraska and seemed, at first, like many newborns. Early reflexes can look normal in some babies with this condition, which is part of what makes the diagnosis so shocking when it arrives.
Her father, Shawn Simpson, told KETV that hydranencephaly means “her whole brain” is not there, with only a tiny portion of cerebellum remaining. The family also described moments that feel personal and hard to reduce to medical checklists, like Alex responding to familiar voices and emotional shifts in a room.
What hydranencephaly is, in plain language
Hydranencephaly is a congenital condition where most of the cerebral hemispheres, the large outer parts of the brain tied to thinking and voluntary movement, are destroyed before birth and replaced by cerebrospinal fluid. In many cases, the brainstem remains, and that matters because the brainstem controls core functions like breathing, heart rate, and basic reflexes.
Doctors andresearchers think the most common trigger is a major disruption of blood flow to the developing brain, often involving the internal carotid arteries. A 2010 case note in the Kathmandu University Medical Journal described the condition as occurring in less than 1 in 10,000 births worldwide and typically developing after the brain’s early structures have formed.
It is also easy to confuse hydranencephaly with hydrocephalus on early imaging. Hydrocephalus is mainly a fluid buildup problem where brain tissue is still present, while hydranencephaly involves missing tissue replaced by fluid, which changes both care and long-term outlook.
Survival is possible, but the needs are intense
For the most part, medical references describe survival beyond early childhood as uncommon, and many children die in the first year. That’s why Alex’s adulthood stands out, even if her disabilities remain severe and her daily care is demanding.
So what keeps the body going in these cases? A detailed StatPearls review on the NCBI Bookshelf by Jose I. Sandoval and Orlando De Jesus explains that preserved deeper structures can support basic life functions, even when the higher cortex is largely absent. In practical terms, that can mean years of round-the-clock support, medical devices, and constant attention to issues like seizures and fluid pressure.
What cases like this mean for medicine and families
Stories like Alex’s can easily be misunderstood online, so clinicians often stress a careful line. A rare outcome does not rewrite the typical prognosis, but it does push researchers to be more precise about what different brain regions do, and what “response” can look like in people with profound neurological injury.
These cases also raise tough real-life decisions, especially when a diagnosis is made during pregnancy or soon after birth. Official rare-disease resources such as the NIH Genetic and Rare Diseases Information Center and the National Organization for Rare Disorders emphasize that symptoms vary, supportive care is central, and families often need long-term medical and social support.
At the end of the day, the biggest takeaway may be the simplest one. The brain is not one single “on or off” switch, and rare conditions like hydranencephaly remind medicine that human life can follow paths that statistics do not fully capture.
The main reference has been published in StatPearls on the NCBI Bookshelf.
