Baby born without brain dies at 12

Table of Contents Show

Stunning Brain Images Reveal Beauty Of Fragile Brain
How long did Trevor live without a brain?
How long can a baby live without a brain?
How old is the boy who was born without a brain?
Is Jaxson still alive?

Trevor Judge Waltrip lived 12 years after being born with hydranencephaly, a rare condition in which the brain's cerebral hemispheres are absent, replaced by sacs filled with cerebro-spinal fluid. (Source: Nicholas Ainsworth)

An x-ray of Trevor's skull shows the little boy's skull, with fluid filling the cavities where the cerebral hemispheres of his brain should be. (KSLA File, 2003)

SHREVEPORT, LA (KSLA) - An ArkLaTex child born without a brain and defied all odds passed away peacefully in his sleep Monday.

Trevor Judge Waltrip was born on Christmas Eve 2001, with just a brain stem and

. It's a rare condition in which the brain's cerebral hemispheres are absent, replaced by sacs filled with cerebro-spinal fluid. The brain stem allowed Trevor to breathe, respond to some stimulus, and maintain a heartbeat. In 2003, his mother Elizabeth told KSLA News 12 that "He's so alert and hates to be alone. He'll sense that, too."

Still, Trevor was blind and unable to verbally communicate.

Doctors were unsure if Trevor would make it 12 weeks. At 17 months, his physician Larry Daniels said that he was very unique to have survived that long, considering babies born with this condition generally don't live to birth."

There's no cure or treatment for hydranencephaly.

Trevor lived for 12 years, with the help of a feeding tube and therapists who stimulated his muscles and joints. His mother says she knows his story touched the hearts of many across the region. When we checked in with the Waltrip family again in 2005, his mother said he was doing well, gaining weight and had 15 teeth, "and he does bite, so he does know what he's doing."

Elizabeth Waltrip also found a support group for parents of babies like Trevor. "Just to know about other babies out there like this because I thought I was the only one. It's really ...I feel much better."

Knowing what the odds are against babies like Trevor, Elizabeth took things one day at a time. "I look at it like he's here for a reason," she said in 2005, "and I thank God everyday for it."

Now that he has passed away, his family is

asking for help to cover funeral costs. Donations can be made to any Chase Bank under the "Trevor Judge Waltrip Donation Account."

Arrangements have been made, with funeral services being held on Saturday, August 30 at 2:30 p.m. at Rose-Neath's Southside Chapel, 2500 Southside Drive.

Visitation will be on Friday, August 29 from 5-7 p.m., also at Rose-Neath Southside Chapel.

A boy born without a brain has defied all medical odds to survive until the age of 12 before dying peacefully.

Trevor Judge Waltrip was born on Christmas Eve 2001 with a rare condition called hydranencephaly which meant his cerebral hemispheres were completely absent and replaced with cerebro-spinal fluid.

The boy was completely blind and unable to communicate but could breathe on his own and respond to some stimuli.

His mother said in 2003: "He's so alert and hates to be alone. He'll sense that, too."

He was looked after by his family and a team of therapists and fed through a tube.

In 2005 his mother added: "I look at it like he's here for a reason and I thank God everyday for it."

Those born with the condition - which has no known cure or treatment - usually only live to the age of 12 weeks, so to nearly make it to his teenage years is astonishing.

Trevor died last Monday.

Stunning Brain Images Reveal Beauty Of Fragile Brain

Jaxon Buell, the boy who was nicknamed “Jaxon Strong” for his determination to live after he was born with an extreme brain malformation, has died. He was 5.

The child passed away "very peacefully and comfortably" on April 1 in North Carolina, his parents said.

His story and striking photos — showing what his family described as "bright blue eyes, awesome hair and amazing smile" — made worldwide headlines, and TODAY featured the family’s account of what it was like to care for Jaxon in 2015 and 2016.

"Jaxon was truly special, filled with strength, sweetness, and an amazing spirit, and he will be missed," his dad said.Courtesy Buell family

"He passed away in my arms and surrounded by his parents and family who were loving on him and providing comfort and endless hours of snuggles throughout his final days," Brandon Buell, 35, his father, told TODAY in an email.

"Ultimately, Jaxon passed away from his body and organs shutting down, as is common with children like him. This had absolutely nothing to do with the COVID-19 virus, but was something we always knew from the beginning would likely happen. We just didn't know when."

Jaxon recently entered into hospice care at home after showing signs of slowing down in the past year or so, and the family was preparing to say goodbye, his dad added.

"Jaxon's legacy is about his strength and his amazing sweet spirit. He truly made me, his mom, his family, and all who learned of his story better," he said.

Jaxon was "thriving and getting a little better each and every day," his dad told TODAY in 2015.Courtesy Buell family

Jaxon was born on Aug. 27, 2014, in Orlando, Florida, with microhydranencephaly, a developmental abnormality that affects the brain. It left him with 80 percent of his brain missing, with the cerebellum — the region that controls movement, coordination and balance — most affected. Doctors believed his brain stopped forming a few weeks after he was conceived, Brandon Buell said.

There were no concerns about the pregnancy until the second ultrasound at week 17, when the ultrasound tech became quiet as she got to Jaxon’s head region, his father recalled. A flurry of tests and potential diagnoses followed.

Doctors weren’t sure he’d be born alive, but Jaxon let out a faint cry when has was delivered via C-section at 37 weeks. The baby boy was very undersized and his head was not fully developed, but he was beautiful, his father said.

Brittany Buell with Jaxon shortly after his birth.Courtesy Buell family

Jaxon stayed in the neonatal intensive care unit for three and a half weeks. He had a strong heartbeat and was breathing well.

“Doctors told us, ‘There’s really nothing we can do for him. Take him home and make him comfortable,’” Brandon Buell said in 2015.

“It sounds crazy, but he didn’t need that much extra care.”

Jaxon with his dad in 2016.Courtesy Buell family

The family had to learn to how use a feeding tube, and deal with seizures and periods of extreme fussiness. Still, Jaxon was happy and comfortable — not on life support or struggling, his father said. The child’s vision was fuzzy, but his hearing was good and he liked to smile, he noted.

The family was told Jaxon would not make it to his first birthday, but he passed that milestone and beyond.

As the boy got older, he progressed in small but significant ways when it came to interacting with his toys and in therapy, his dad said. He originally did not have voluntary movements, but after turning 2, the family said it was overjoyed that Jaxon would pucker his lips to give kisses, and reach for his parents or his toys.

Jaxon would have turned 6 in August.Courtesy Buell family

Still, his unique challenges meant no one knew what the next day would bring for him, his dad told TODAY in 2016.

“There’s a miracle behind Jaxon’s story. We want to let other families know that even when there’s a dark situation, every life should be celebrated, valued and cherished,” Brandon Buell said.

A. Pawlowski is a TODAY health reporter focusing on health news and features. Previously, she was a writer, producer and editor at CNN.

How long did Trevor live without a brain?

Trevor Waltrip was born with just a brain stem and a rare condition called hydranencephaly. Doctors didn't think he would live 12 weeks, but he defied the odds and lived 12 years.

How long can a baby live without a brain?

The most common type of anencephaly, where the brain has entirely failed to form, except for the brain stem. Infants rarely survive more than one day after birth with holoanencephaly.