TAVARES, Fla. – A baby born without most of his brain is defying the odds.
Little Jaxon Buell wasn’t supposed to make it to his first birthday.
According to the Boston Globe, the Florida boy was born with a severe brain malformation that kills most infants within days or hours of birth. Many, like Jaxon, don’t even survive long enough to be born.
It wasn’t until they got home from the hospital after his birth that Jaxon’s parents, Brandon and Brittany Buell, learned their son had a condition called anencephaly.
“They didn’t give us a definitive term for what Jaxon had in the hospital,” Brandon told the Boston Globe. “We didn’t see the word ‘till we got home and looked at discharge papers and saw anencephaly. It means no brain outside of a brainstem.”
At 12 months old, Jaxon has defied the odds and lived far longer than expected.
But his parents say his medical complications have grown.
Last month, Brandon and Brittany left an Orlando hospital and took their son to the emergency room at Boston’s Children’s Hospital. It’s one of the top hospitals for pediatric neurology.
“Our plan was to go to the emergency room because they can’t turn you away,” Brittany explained to the Boston Globe.
It was there that Jaxon received a slightly different diagnosis: microhydranencephaly.
According to the Boston Globe, it means he has a brainstem, but his cerebellum did not form properly.
“Children who have this are neurologically devastated,” Ethan Goldberg, a neurologist at The Children’s Hospital of Philadelphia who has not treated Jaxon, told the Boston Globe. “The neurons are not there. Neurons are just absent. There’s no way to put them there. There’s nothing even to repair. It’s like having a car with no engine. There is absolutely no treatment. The ship has sailed long ago.”
After three weeks in Boston, the family returned to Florida.
While they didn’t find the miracle they were looking for, their son did receive a new medication that is helping him sleep better.