Florida baby born without most of his skull, brain celebrates 1st birthday: ‘His life is already miraculous’

Jaxon Strong, who was born with most of his skull missing, turned one last month.
Jaxon Strong, who was born with most of his skull missing, turned one last month. (Facebook)

A Florida boy given just days to live when he was born missing most of his brain and skull celebrated his 1st birthday last month as his father looked back on the family’s unbelievable journey.

Jaxon Emmett Buell, who has an extremely rare brain malformation called microhydranencephaly, was born on Aug. 17, 2014. A year later, the Tavares toddler is teething and learning to say “mama” and “daddy” — and his parents, Brandon and Brittany Buell, relish every moment with their boy.

“All we ever wanted was to give Jaxon the happiest, most comfortable, and most fulfilling life possible, because we know how precious his days are with us,” Brandon Buell wrote in a Saturday Facebook post. “Every doctor we’ve talked to is fascinated that Jaxon is here today, and they can no longer predict a prognosis, although we know the reality behind this better than anyone else, what Jaxon is up against, and that his life is already miraculous at this point.”

Doctors first detected some kind of malformation during Brittany Buell’s pregnancy, and gave the couple the option to terminate, Brandon Buell said.

Experts assured the Buells that their baby wasn’t in pain and there were no added risks to Brittany Buell’s health, so the couple decided to carry their baby to full term — even if he’d only have a few days to live after birth.

“Jaxon was our baby, and we only had one shot to do everything we could for him. We would never choose to play God in that situation, when we had been given a child, and it was our job to give him a chance to live.” Brandon Buell wrote.

At birth, doctors diagnosed Jaxon with anencephaly, a birth defect that means the newborn is missing parts of the brain and skull. In the following months, he developed normal infant issues — like teething and fussiness — and scarier, more unusual symptoms, such as serious gastrointestinal issues and seizure-like episodes, the family told boston.com.

Jaxon’s symptoms seemingly got worse in August, just weeks before his first birthday. He stopped sleeping through the night and the family became more desperate for answers and help.

So the Florida family headed to Boston to drop by the city’s top-rated Children’s Hospital, which houses a famous pediatric neurology department, unannounced.

Parents Brandon and Brittany Buell said they are enjoying every day they have with Jaxon.
Parents Brandon and Brittany Buell said they are enjoying every day they have with Jaxon. (Facebook)
“Our plan was to go to the emergency room because they can’t turn you away,” Brittany Buell told the Boston outlet. “We walked in and said ‘We’re here from Florida.'”

Just before Jaxon’s 1st birthday, the Boston doctors diagnosed him more specifically with microhydranencephaly, which means his cerebellum, the part of the brain that controls balance, did not form properly and his cerebral cortex is nearly missing. The more precise diagnosis helped doctors recommend new medications to help Jaxon sleep through the night.

The family flew home to Florida on Sept. 3. The Buells said they are still focused on giving Jaxon the best life possible, even if they don’t know how long that life will be. Some microhydranencephaly patients have lived into their 30s.

“He’s back to smiling at us, always so happy in the morning after he wakes up and takes turns looking at both Mommy’s and Daddy’s face, seemingly as if he is so excited to start another day,” Brandon Buell said of his son.

The family also hopes Jaxon’s story will advance medical research — and help more families in the future.

“We believe the medical world will also benefit from Jaxon’s story, from his rare neurological condition, and from his diagnosis, because we are certainly seeing firsthand how much there is still to learn about the human brain,” Brandon Buell wrote. “We plan to work with the top infant neurological teams in the country, if not the world, for all of these benefits, and we keep our focus as broad as we possibly can so that Jaxon’s story does not end with Jaxon.”

He continued: “No matter who you are or what you believe in, it’s clear that Jaxon’s tiny footprints will have a lasting impression on this world, and that he has already touched and inspired more lives in one year than most of us ever will in our lifetime.”

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