FAMILY & PARENTING

Jaxon Buell, The Boy Born Missing Most Of Brain And Skull, Passes Away At The Age Of 5

by Karen Belz
Karen Belz has written for sites such as Bustle, HelloGiggles, Romper, and So Yummy. She's the mom of a sassy toddler and drinks an alarming amount of Sugar-Free Red Bull in order to keep up with her.

Pregnancy can be an incredibly scary time in a woman’s life. While it’s often portrayed as a joyous occasion, there’s always the chance that an appointment will lead to bad news.

For Brandon and Brittany Buell, they learned that their son, Jaxon Buell, wouldn’t live a full life after he was born. When it was discovered that he had brain and skull malformations, they didn’t expect him to even make it past a few days.

While knowing this, Brandon and Brittany chose to continue with the pregnancy. In January of 2014, Jaxon was born. When he arrived, he had only part of his skull. His brain was one-fifth the size of a standard newborn.

“We’re never going to play God. We always gave him a chance, a fighting chance,” Brandon said to News4Jax.

Jaxon was eventually diagnosed with microhydranencephaly. It’s a very rare disease that affects the brain, causing profound developmental delay. Symptoms often vary from person to person. Jaxon’s parents knew that his time on earth would be short, but they got more time with their son than they initially imagined.

Jaxon’s parents made sure to let people know that his death had nothing to do with the health scare currently happening worldwide. They knew that Jaxon wouldn’t live a long life, but they just didn’t know when his time would be up. That means that they made every moment with their son count.

“Jax passed away very peacefully, comfortable in my arms,” his father said. “He was surrounded by his parents and his family and enjoyed so much love and snuggles in the final moments of his life and journey with us.” He also said that this “was something we always knew from the beginning would likely happen. We just didn’t know when.”

Jaxon’s long survival even shocked his doctor, who reportedly felt as if the young boy wouldn’t make it to his first birthday. “His doctor specifically tells us he’s writing his own book and we’re along for the ride,” mom Brittany said to First Coast News back in 2016. “He shocks us every day.”

Oddly enough, while Jaxon clearly had brain and skull defects, the news source also reports that it was around Jax’s first birthday that he’d get his official diagnosis of microhydranencephaly. “The first month of his life they had him hooked up to every single machine and cord you could think of because they thought he was going to need all these things,” Brandon noted. “But one by one they slowly started turning the machines off.”

Based on Jaxon’s miracle survival after that first year, his family thought it would be a good idea to start a foundation. Their foundation helps raise both money and awareness for neurological research. Since Jax’s condition was so rare, he got a lot of attention when it came to scientific discovery and analysis.

The Buell family also wrote a book about Jaxon. It’s called Don’t Blink — What the Little Boy Nobody Expected To Live Is Teaching the World About Life. According to readers, it’s an inspirational book. The Buells wanted to share positivity while also sharing information about their son’s condition.

In a piece composed for Today, Brandon mentioned that Jaxon’s doctor was inspired by his case. “His condition is so rare that even one of his doctors said, ‘I’m fascinated by your child. Your son is the rarest of the rare I’ve seen. I’m learning from him,'” Brandon wrote.

The couple first learned about Jaxon’s condition during the 17th week of pregnancy. Usually, moms feel as if they’re “in the clear” around this time to share the news with family and friends. However, Brittany didn’t expect the news she heard during this particular appointment.

“The ultrasound tech got quiet when she got to Jaxon’s head region — Brittany noticed it, I really didn’t,” Brandon said. “The very next morning, they called Brittany on her way to work and said there was concern with the baby. They believed at that time it was spina bifida. We were just rocked by that news.”

Spina bifida is another condition that can be fatal for a baby. While the lifespan for those who have it has increased, it’s still a defect that affects the spine and spinal cord. After that was ruled out, Jaxon’s second diagnosis was Dandy-Walker syndrome. Finally, doctors seemed to settle on Joubert syndrome.

Joubert syndrome focuses on the underdevelopment of the cerebellar vermis. People who have it may have trouble with balance. Each patient reacts slightly differently to it. Unfortunately, there’s no cure. The Buell family stuck with this diagnosis until Jaxon was born.

“Jaxon was born via C-section at 37 weeks,” Brandon wrote. “They were preparing us the entire time that he may not be born alive and if he was, he’d probably be hooked up to a lot of machines and couldn’t survive. The very first memory I have of Jaxon is I heard a real faint cry. It instantly choked me up. They brought him over and that was the very first time I got to see him.”

Brandon said that despite Jaxon’s differences, he was still very much like a standard newborn. “It sounds crazy, but he didn’t need that much extra care,” he said. “We had to learn to how use the feeding tube and deal with some seizure activity, but other than that, he was a normal baby in so many ways.” However, they still felt like they might lose him every day.

Despite the fact that he didn’t have parts of his brain, he was still able to see, hear, and speak a few words. “There’s so much light and life in his eyes that we see when he responds to something,” said Brandon. “He absolutely recognizes me and my wife. He loves to smile at us. I swear, he’s the sweetest baby we’ve ever met because he’s always in a good mood, unless he’s teething. He snuggles with us so close.”

Brandon said that having Jaxon in their lives made them a stronger family. “It’s changed us for the better and he has certainly made us stronger people. The petty things that used to make us mad, like rush hour traffic or stubbing your toe — it doesn’t phase us anymore because our priorities are so much richer and deeper now. He has changed our lives and I’m pretty sure a lot of special needs parents will say the same thing.”

While it’s sad that Jaxon has died, it seemed like he had the best life he could. He was always surrounded by love and comfort, and he never seemed to suffer. Jaxon also helped others who might suffer from his condition. He brought awareness and also information about the defect during his short life. Our hearts go out to the Buell family for this tragic loss.