- Alex Simpson from Omaha has defied odds by reaching 20 years with hydranencephaly
- Hydranencephaly causes most brain hemispheres to be missing, replaced by fluid
- Doctors predicted Alex would not live past age four, but she celebrated 20th birthday
Alex Simpson, a 20-year-old woman from Omaha, Nebraska, has defied doctors' predictions by recently celebrating her 20th birthday. Notably, Alex was born with hydranencephaly, a rare condition where most of the brain's hemispheres are missing. Doctors initially told her parents she would likely not live past the age of four, KETV reported. When asked why they believe Alex has lived so much longer than expected, her parents said, "love."
Hydranencephaly is a severe and rare neurological disorder where the cerebral hemispheres, the largest parts of the brain responsible for thought and coordination, are largely or entirely absent and replaced by cerebrospinal fluid. The condition typically results in death within the first year of life, making Alex's survival to age 20 a "medical miracle" to her family.
"(Hydranencephaly) means that her brain is not there, not half a brain, her whole brain. Technically, she has about half the size of my pinky finger of her cerebellum in the back part of her brain, but that's all that's there," Alex's dad, Shawn Simpson, said.
Alex cannot see or hear, but her family believes she can sense their presence and the emotions of those around her. "Say somebody's stressed around her. Nothing will even happen — it could be completely silent — but Alex will know. She'll feel something. Like, if my grandma's hurting, in her back, she'll radiate off of it – it's crazy," SJ, Alex's 14-year-old brother, told the outlet.
Her parents, Shawn and Lorena Simpson, credit their faith and love for her defying the medical odds, calling her a "fighter".
"Twenty years ago, we were scared but faith, I think, is really what kept us alive," Shawn said.
Alex celebrated her 20th birthday on November 4.
About Hydranencephaly
Hydranencephaly is a rare brain disorder where most of the brain's hemispheres are missing or severely underdeveloped, often replaced with cerebrospinal fluid. It occurs during fetal development, usually due to vascular or traumatic issues, leading to severe physical and cognitive impairments. The condition affects 1 in 5,000 to 1 in 10,000 pregnancies, typically fatal within the first year, according to the Cleveland Clinic.
- Cause: Often due to stroke, infection, or damage to the fetal brain during pregnancy, which leads to destruction of brain tissue.
- Symptoms: Babies may appear normal at birth but later show signs such as seizures, poor feeding, lack of growth, blindness, and developmental delays.
- Diagnosis: Usually confirmed through imaging (MRI or CT scan).
- Prognosis: There is no cure. Life expectancy is significantly reduced, but some children live longer with supportive care.
