A child’s first birthday is a momentous occasion for all, but the Buell family celebrates far more than an age for their baby boy, Jaxon. The Florida-born infant was born last year missing a significant portion of his head and skull — expected to live for only a few days past his birth.
Miraculously, he’s surpassed that prognosis.
When Jaxon’s mother, Brittany, went in for a routine ultrasound during her pregnancy, doctors were unable to explain the abnormal shape of his head. She and her husband, Brandon, then learned upon giving birth that their baby was born with a rare birth defect called anencephaly, in which the neural tube that helps form the skull and brain does not fully develop during the first month of pregnancy.
Despite the odds, Jaxon has been able to reach many developmental milestones. Brandon wrote on his Facebook: “He is talking up a storm these days, truly teaching himself how to communicate with us in his own way, in his own language, and we actually understand it after learning with him for these 13 months. He says ‘Mama’, and he says ‘Ah Ah’ (Dadda), and ‘Addy’ (Daddy). I love that. Jaxon is simply that, Jaxon. He is so normal in so many ways.”
Jaxon’s journey, however, hasn’t always gone so smoothly. The now-1-year-old has been enduring seizures over the past few months and uses a feeding tube. The Buells flew to the Boston Children’s Hospital, where Jaxon was more specifically diagnosed with microhydranencephaly, in which fluid-filled sacks make up the incomplete portions of the brain — an even more rare defect without a cure.
In addition to having more than 180,000 supporters of #JaxonStrong, the couple continues to be optimistic about their son’s future.
Said his dad: “There are cases of Microhydranencephaly children who have lived into their 30s, have lived relatively normal lives, can learn to swim, and have and can use their senses, as well. Yes, there will be difficulties and struggles and limitations, but they recognize their family, they learn to communicate, and Jaxon is certainly on his way in all of those aspects.”