Jaxon Buell, born with most of his brain unformed, dies at 5 after outliving early forecasts

NORTH CAROLINA — Jaxon Emmett Buell was born in Orlando, Florida, on 27 August 2014 with microhydranencephaly, a rare condition that combines a very small skull and brain with large areas of brain tissue replaced by fluid. Family and later reports said roughly 80 percent of the brain had not developed. Part of the skull was missing.

An ultrasound at about 17 weeks showed the problem. Doctors offered to end the pregnancy. Brittany and Brandon Buell declined. Staff prepared them for a stillbirth or survival measured in hours or days. Jaxon went home and kept living.

There is no treatment that restores missing brain. He was fed by tube, had frequent seizures and stayed very small. His parents said he smiled, knew familiar faces and was often comfortable. They called him “Jaxon Strong” and posted ordinary days on Facebook. CNN, TODAY and other outlets picked up the story. The argument they made was simple: the diagnosis was as grave as doctors said, and the child still had a life worth showing.

Early estimates moved in steps — two days, two weeks, two months, perhaps two years. He reached one, two and five. After a slow decline he entered home hospice. On 1 April 2020 he died in his father’s arms from organ failure tied to the condition, his parents said, not from COVID-19.

Brandon Buell told TODAY they had always expected this ending; they had not known when. He spoke of Jaxon’s strength and “sweet spirit.” The parents later divorced. Jaxon had been living with his mother.

Microhydranencephaly is uncommon and usually fatal in infancy. Jaxon’s public record did not change that medicine. It recorded what his family did with years no one had promised: keep him visible, keep him held, and treat a short life as a full one.

Sources

• TODAY, “Jaxon Buell, boy born with part of brain missing, dies at 5,” April 2020; earlier family profiles, 2015–2016
• CNN, coverage of his first birthday, October 2015
• People and WJXT interviews with Brandon Buell after the death