When Alex Simpson was born, her parents were happy and had no idea about news that would devastate them just two months later. The Nebraska newborn was diagnosed with hydranencephaly, a rare brain developmental disorder and Alex’s parents came to know of this diagnosis when she was only 2 months old.
According to the Cleveland Clinic, “Hydranencephaly is a rare birth abnormality that affects the central nervous system. A baby with the condition is missing certain portions of their brain called the cerebral hemispheres. The cerebral hemispheres are two halves of the cerebrum, the front and largest part of their brain.”
The site further adds, “Instead of cerebral hemispheres, there are sacs filled with cerebrospinal fluid (CSF). CSF is fluid that cushions and protects their brain and spinal cord. A baby with hydranencephaly eventually develops an enlarged head and other serious symptoms. The condition is usually fatal before a baby is born or shortly afterward.”
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The disease is extremely rare, with scientists estimating “that it occurs in 1 in 10,000 to 1 in 5,000 pregnancies” as Cleveland Clinic mentions. Unfortunately for Alex, she happened to be that 1 rare case. The doctors had told her parents that she would probably not be able to make it past the age of four years.
Unilad reported that, “Alex “was born with no brain – all that’s there is half a pinky-finger’s worth of the organ in the back of her cerebellum.” However, despite the doctors’ diagnosis she recently celebrated her 20th birthday.
Alex’s parents Shawn and Lorena Simpson believe that it is love that has helped their daughter survive. Talking to KETV Shawn said, “Twenty years ago we were scared, but faith, I think, is really what kept us alive.”
Moreover, her family believes that despite not being able to see or hear anything because of hydranencephaly, Alex understands when her loved ones are near her. Explaining it, Shawn said, “You can see that when I went up there and talked to her a little bit ago, she was looking for me.”
SJ, Alex’s younger brother also expressed similar sentiments, saying, Say somebody’s stressed around her. Nothing will even happen — it could be completely silent — but Alex will know. She’ll feel something.”
Baby born with nearly no brain still alive 20 years later | Doctors said Alex Simpson wouldn’t live past the age of four. https://t.co/PzhsUL20F2 pic.twitter.com/rcWtcFMoWG
— News 4 San Antonio (@News4SA) November 9, 2025
While the family is now celebrating Alex’s 20th birthday, her mother Lorena talked to the Daily Mail about how difficult it was during the initial years. She said, “It was terrible to not know if she was going to make it through the night. So for three years, I would sleep with her, making sure that she’s breathing, making sure that she’s moving.”
She further added, “Every night I was praying and praying she’d make it through.” The family loves their child despite her condition and that was evident from what they said during her 20th birthday. They also wanted to clarify what Alex means to them as Shawn said, “A lot of people think she’s just a vegetable, and we have heard tons of negative comments.”
He also mentioned, “It’s one of our missions in life to let people know that just because people are disabled doesn’t mean they don’t have a right to enjoy life as much as possible.”
While Alex does not have a developed brain, she does have a loving family who have made sure she’s well cared for and given the life she deserves
