Baby Born With Partial Skull Thrives Despite Odds

By SHERRI LONON (Patch Staff)

When Brittany and Brandon Buell were given the option to terminate their pregnancy because of problems detected with their baby, they opted to write their own story.

Today, their son Jaxon is following his parents’ lead.

Jaxon, who turns 14 months on Oct. 27, was born with an extremely rare condition known as microhydranecephaly. The condition is characterized by abnormalities in the brain and may also cause the skull to form improperly. Known to create profound developmental and intellectual disabilities, the condition is incurable.

While doctors told the Buells their son would only live a few weeks, they pushed through six different misdiagnoses before bringing him to Boston Children’s Hospital, Brandon Buell told Patch. There doctors told the Tavares, Fla., couple their son had microhydranecephaly and began to spell out what they could expect.

“It was a rollercoaster ride of emotions for a very long time,” Brandon said. “We started off believing everything the doctors told us, excited about having a child, but the unknown of his life petrified us.”

Facing the Unknown

Brushing fears aside, the couple watched as their child began to defy the odds.

“We began to realize that Jaxon had much more strength and his situation had more hope than they had ever thought, and we are now so strong and encouraged, ourselves, because of the progress Jaxon has made.”

That progress includes many milestones parents of other babies revel in seeing their children achieve. Jaxon is learning to say words, can communicate with his family, roll over and even play with toys.

“He is a normal baby in so many ways, and we do our best to treat him that way, as well,” Brandon said. “Yes, he has his struggles, including dealing with acid reflux and multiple mild seizures every day. However, given his severe diagnosis and the doubts his doctors had for him since the beginning, his progress so far has been remarkable.”

Doctors, Brandon said, have even stopped giving Jaxon a prognosis since he’s bested them all so far.

“They are all fascinated that he is still with us today and hitting different milestones,” Brandon said.

Brandon credits Brittany for Jaxon’s remarkable progress.

“Brittany staying home with Jaxon full-time has been one of the most important aspects of Jaxon thriving to this point,” he said. “They have a priceless relationship that cannot be duplicated by another.”

The couple has managed to handle Jaxon’s expenses and that of their bustling household courtesy of Brandon’s full-time job and fundraisers launched on the family’s behalf. A recent GoFundMe campaign, for example, recently surpassed goals to meet those needs. The couple is now speaking with nonprofit organizations that have helped the family along the way or that are “directly linked to Jaxon’s diagnosis” to help fund medical research or assist other families walking similar paths.

Beyond the financial support, Brandon and Brittany say the best way for people to help them and Jaxon is to follow his progress on the Jaxon Strong Facebook page.

“We simply ask that people share Jaxon’s story in a positive light, whether from a faith-based standpoint, or for the remarkable progress he is making in a medical and scientific way,” Brandon said.

Hope Remains Constant

What the future holds for the Buells remains unknown, but hope is now a constant.

“Our hope is that Jaxon continues to progress, while remaining happy, healthy and comfortable,” Brandon said. “We believe Jaxon can do anything he wants, and I look forward to, as his father, playing sports with my son.”

Jaxon, the Buells say, has made them stronger and better people who appreciate the value of life and its preciousness.

“Brittany and I are a humble, small family from a small town,” Brandon said. “We are truly humbled and appreciative of every ounce of support, from every person, that we have ever received for Jaxon.”

To keep up with Jaxon’s progress, visit the Jaxon Strong Facebook page.

Photos and video courtesy of the Buell family