BookmarkBookmarkTickBookmarkAddCheckBoxFilledCheckBoxCircleBumpCheckedFilledMedical

"Normal Babies Look Weird to Us"

save article
profile picture of Anisa Arsenault
By Anisa Arsenault, Associate Editor
Updated February 2, 2016
Hero Image
Image: Facebook

At thirteen months old, Jaxon has outlived everyone’s expectations. And when he started to utter “mama” and “daddy,” he blew them away again.

The reason? Jaxon was born with a shrunken head and severe brain malformation. The official diagnosis — which took months to get — is microhydranencephaly. He has no cerebral cortex and his cerebellum, which controls balance and coordination, didn’t form properly. His brainstem, responsible for motor skills, is thinner than it should be and he shows little sign of brain activity. There is nothing that can be repaired and there is no cure.

Yet despite these developmental obstacles, Jaxon is hitting his milestones, like sitting up and reaching and grasping. He’s a happy baby boy; it’s just unclear how long this will last.

Parents Brittany and Brandon Buell have been aware of and prepared for complications for quite some time now. The diagnosis during pregnancy was spina bifida. But after Jaxon’s emergency c-section on August 27 last year, they knew it was something else.

“It was a bit startling and sobering. I looked at his head,” Brandon tells Boston.com. “I tried to prepare [Brittany]. I said, ‘Just so you know, his head is small.’ And I just thought: ‘Wow this is a real situation, and we have no idea how this is going to go.’”

Jaxon was re-diagnosed with anencephaly , a neural tube defect in which parts of the brain and skull are missing. “They sent us home with hospice,” Brittany says. “[The doctors] assumed he would peacefully pass away. But I canceled hospice within a week.”

The months that followed were by no means smooth sailing; Jaxon was hospitalized for feeding tube issues and viruses. But things took a turn for the worse this summer. After gastrointestinal issues, sleep problems and seizure-like episodes, the Buells headed to world-renowned Boston Children’s Hospital.

“Our plan was to go to the emergency room because they can’t turn you away,” Brittany says. “We walked in and said, ‘We’re here from Florida.’”

The diagnosis was adjusted yet again, to microhydranencephaly, and although it sounds scary, it’s a bit of a relief to the Buells.

“It’s really helpful to finally have a diagnosis that makes sense,” Brandon says. “We would not have that if we hadn’t come to Boston. We came to Boston hoping to find a way to add something to the quality and comfort of his life.

In the meantime, the Buells will be working to maintain that quality of life for Jaxon with his new medication.

“Normal babies with their normal size heads? They look weird to us," says Bradon.

(via Boston.com)

save article
Article removed.
Name added. View Your List
ADVERTISEMENT

Next on Your Reading List

The pink sneakers worn by Austin Reaves #15 of the Los Angeles Lakers
NBA Player Dons Pink Sneakers for a Surprise Baby Sex Reveal
By Wyndi Kappes
woman in her 40s with positive pregnancy test
For the First Time, More Babies Are Born to Women Over 40 Than Teens
By Wyndi Kappes
Megan Fox Welcomes Rainbow Baby With Machine Gun Kelly
Megan Fox Welcomes Rainbow Baby With Machine Gun Kelly
By Wyndi Kappes
ADVERTISEMENT
Lindsay Hubbard attends the Us Weekly and Pluto TV's 2024 Reality TV Stars Of The Year at The Highlight Room on October 10, 2024 in Los Angeles, California
Summer House’s Lindsay Hubbard on the Highs and Lows of Combo Feeding
By Wyndi Kappes
pregnant woman holding hands with husband in labor and delivery room
‘You Need to Watch Your Wife Give Birth,’ Dad Says in Viral Video
By Wyndi Kappes
frida breast milk ice cream
Breast Milk Ice Cream Is Hitting Freezers This Summer
By Wyndi Kappes
pregnant woman with hands on belly
Maternal Cardiac Deaths Are on the Rise, Especially for Black Moms
By Wyndi Kappes
ADVERTISEMENT
Ellen Pompeo attends the "Good American Family" By Disney+ Premiere At Pathé Beaugrenelle on March 24, 2025 in Paris, France
Ellen Pompeo Says Moms Can’t Give 100% at Work—And That’s Their Superpower
By Wyndi Kappes
Amy Jackson, Ed Westwick at the Rabanne Party as part of Paris Ready to Wear Fashion Week held at La Monnaie on September 26, 2024 in Paris, France
Gossip Girl’s Ed Westwick Gives His New Baby Boy Iconic Gaelic Name
By Wyndi Kappes
toddler playing with play doh
Pediatric OT Shares Activities to Support Pre-K Developmental Milestones
By Wyndi Kappes
ADVERTISEMENT
doctor measuring pregnant woman's blood pressure
Blood Pressure During Pregnancy May Be a Clue to Future Heart Health
By Wyndi Kappes
Celebrity Chef Sophia Roe is pregnant
Celebrity Chef Sophia Roe Is Pregnant
By Wyndi Kappes
Benadryl Bottles Recalled Due to 'Child Poisoning' Risk
Benadryl Bottles Recalled Due to 'Child Poisoning' Risk
By Wyndi Kappes
ADVERTISEMENT
Mom Pens Superpowers Song for Son in Honor of World Down Syndrome Day
Mom Pens Superpowers Song for Son in Honor of World Down Syndrome Day
By Wyndi Kappes
Doctor listens to newborn baby heart with stethoscope
Newborn Heart Defects Increase in States With Strict Abortion Laws
By Wyndi Kappes
kylie kelce talking about pregnancy on her podcast not gonna lie
Kylie Kelce Reveals What She Will (and Won’t) Do to Induce Labor
By Wyndi Kappes
smiling little girl eating veggies
Dinosaur Time Is the Latest Hack for Getting Kids to Eat Their Veggies
By Wyndi Kappes
ADVERTISEMENT
Sia’s Unique Baby Name Choice Has Parents Talking
Sia’s Unique Baby Name Choice Has Parents Talking
By Wyndi Kappes
Olivia Culpo at the Victoria's Secret Fashion Show held at the Brooklyn Navy Yard on October 15, 2024 in New York, New York
Olivia Culpo on the Pregnancy Complication That Left Her on Bed Rest
By Wyndi Kappes
baby formula and baby bottle
Baby Formula Under Scrutiny as Study Finds Heavy-Metal Contamination
By Wyndi Kappes
ADVERTISEMENT
Article removed.