Alex Simpson's Brain: The Girl Who Lived Without a Cerebrum

Hydranencephaly - Imagine you give birth to your child and a few weeks or months later the doctors tell you that your baby won’t live long enough. Yes, you read it right. This is the story of Shawn and Lorena Simpson, who were told their daughter Alex was diagnosed with Hydranencephaly. It is a condition so rare and severe that most children don’t survive even their first year.

In this case of Hydranencephaly the doctors gently prepared the family for the worst. They told Shawn and Lorena Simpson that Alex might live a few months, maybe a few years, but certainly not past the age of four. Fast-forwarding the story of Alex to this November and she just blew out 20 candles on her birthday cake. She turned 20 this year. So now the question is how can someone born with almost no brain live two decades? Let's read the complete article to explore the science, the story, and the miracle behind it. Alex Simpson Brain

What Is Hydranencephaly?

Hydranencephaly is a severe congenital brain disorder. It is explained by:

Cerebral hemispheres are missing or severely underdeveloped. They are majorly responsible for cognition, movement, language, sight, hearing, memory, emotions.
The skull cavity instead of cerebral hemispheres is filled with cerebrospinal fluid.
Occasionally, only small structures like the brainstem, meninges, and parts of the cerebellum or basal ganglia are present.

**Author Note - This article does not intend to sensationalize medical conditions, but to explore resilience, caregiving, and brain function with compassion and accuracy; it is written for educational and scientific understanding of rare neurological conditions and neuroplasticity.

How rare is Hydranencephaly?

It affects 1 in 5,000 to 1 in 10,000 pregnancies.
In the US, only 1 in every 250,000 births.
Infants with Hydranencephaly do not survive past the first year.
Very few infants reach childhood.
Almost none of the Hydranencephaly infants have reached adulthood

Therefore, these factors make Alex’s 20th birthday considered a medical miracle.

Alex Simpson’s Story: A Miracle Case of Neurology

Alex was born to Shawn and Lorena Simpson in Omaha, Nebraska, with almost no brain. According to her father, Shawn: “She had about half the size of my pinky finger on her cerebellum, that’s all that’s there.” Yet Alex is:

Alive, responsive, emotionally connected and recently in the month of November she turned 20 years old.

What brain parts does Alex still have?

Brainstem which controls breathing, heartbeat, sleep cycles.
Meninges which act as the protective layers around the brain.
Basal ganglia which assist in movement & emotional processing.
And a very tiny portion of the cerebellum.

Even though the cerebrum is missing, the above-mentioned brain structures have kept her alive. Similar minimal or no awareness states have been observed in EEG studies of dissociation and internal processing.

How Does She Sense Emotions Without a Cerebral Brain?

The facts are that Alex cannot see, hear or speak, but her family says she senses emotions deeply. Her brother said that “If someone is stressed, even in silence, Alex will know. When someone is hurting, she feels it.” How is this possible then?

The brainstem and basal ganglia remain intact. These regions handle:

Basic sensory awareness
Facial expression processing
Pain response
Emotional tone

The tiny Cerebellum helps with:

Emotional modulation
Body awareness
Sensory integration

It is not higher thinking, but it is deep and instinctive emotional processing. Alex's case supports the evidence that consciousness and emotion are not exclusively dependent on the cerebral cortex.

How Did Alex Survive So Long?

This question is very common. How did Alex survive so long, and the Doctors say one word: Love. Her parents also believe that she survived due to: Love, Faith and Family presence Her father Shawn says that, “Twenty years ago, we were scared. But faith is what kept us alive.” Supportive parents and family play a major role:

24/7 monitoring, Management of infections, Specialized nutrition, Seizure control and Proper positioning and therapy.

To prevent any complications, children with hydranencephaly require constant care.

How Does Hydranencephaly Develop?

Hydranencephaly usually starts early during fetal development.

Possible causes of Hydranencephaly include:

In-utero stroke which means blood vessel blockage.
Infections like toxoplasmosis or CMV during pregnancy.
Vascular injury means disruption of blood flow to the developing brain.
Rare genetic disorders which affect the blood vessel formation.
Complications or Trauma during pregnancy

Above listed events can destroy the developing brain tissue, leaving only fluid-filled spaces.

What Does Hydranencephaly Look Like at Birth?

Many babies born with Hydranencephaly appear completely normal at birth:

They have a normal head size.
Their reflexes are normal.
Babies have normal crying and movement at birth

These normalcies make the condition to get missed easily.

Symptoms seen weeks or months later:

Seizures
Extreme irritability
Poor feeding
Visual impairment or Blindness.
Hearing impairment
Increased muscle tone or stiffness.
Hydrocephalus - Enlarged head due to fluid buildup.
Delayed development

Alex was also diagnosed at two months old, which is very common because early symptoms can be subtle.

Symptoms of Hydranencephaly:

There are seizure episodes and always a risk of seizures.
Hydrocephalus - Enlarged head due to fluid buildup.
There are severe developmental delays.
Blindness and visual impairment.
No hearing or Hearing issues.
Muscle stiffness or Spasticity.
Difficulty in swallowing
There is lack of any voluntary movement
Growth issues
Body temperature regulation problems

How Is Hydranencephaly Diagnosed?

During pregnancy: Via Ultrasound (2nd trimester) or MRI (if suspected)
After birth: MRI, CT scan or Neurological exam

The diagnosis of Hydranencephaly is usually confirmed when large portions of the cerebrum are absent.

Is There a Cure for Hydranencephaly?

The answer is no. Hydranencephaly is: Irreversible, incurable and managed through supportive care only.

Treatment options include:

Management of seizures
Infections treatment
Surgery or shunt for hydrocephalus
Support for feeding.
Physical therapy
Comfort and care

Life expectancy in most of the cases is only up to a few months to a few years.

Why Is Alex's Survival So Rare?

Children with hydranencephaly do not survive due to the following reasons:

Lack of higher brain function
Higher risk of infection
Difficulty in feeding
Poor seizure management
Breathing or respiratory issues

Reaching the age of 20 years, makes Alex among the longest-known survivors of Hydranencephaly worldwide. Alex’s case is now being studied as an example of :

Brainstem’s resilience
How emotional processing can happen without a cerebral cortex
An example of extreme neuroplasticity.
Major role of caregiving in survival

Her case particularly challenges the assumptions about how much neural tissue is required for emotional processing and basic survival.

Hydranencephaly vs Hydrocephalus: Differences

Both the conditions sound similar and confusing but:

Hydranencephaly:

Cerebral hemispheres are missing
Brain tissues are destroyed
The skull is filled with fluid
It is an extremely rare condition.
Poor prognosis

Hydrocephalus:

The Brain is present.
Fluids build up around the brain.
Condition can be treated with shunts
Many people with Hydrocephalus survive up to adulthood.

What Does Alex Simpson’s Case Add to Neuroscience?

Alex Simpson’s case and her survival challenges long-held assumptions that the cerebral cortex is required for meaningful human presence or emotional awareness; the case also highlights:

Limits of current consciousness models
Brainstem-based survival systems
The role of caregiving in neurological outcomes
Emotional processing without higher cognition

Cases like these expand science and are not “exceptions to science”.