When one couple found out that their unborn baby was suffering from a rare brain defect, they were devastated to learn that he likely wouldn’t survive long after birth. However, their little boy has repeatedly proven his doctors wrong, shocking both them and his parents alike.
In 2014 Brittany and Brandon Buell were living in Tavares, Florida, and were no doubt excited about welcoming their new baby later that year. Indeed, the couple had passed through their first trimester, usually considered the riskiest part of pregnancy, without any cause for concern.
However, at their second ultrasound scan, 17 weeks into Brittany’s pregnancy, medical staff noticed something unusual. And as Brandon told Today in October 2015, the expectant parents knew something was wrong when “the ultrasound tech got quiet when she got to Jaxon’s head region.”
Just 24 hours later, moreover, the Buells’ world fell apart, when they were told that their unborn child could be suffering from spina bifida. However, doctors would need to investigate further, as the results were still rather inconclusive.
After a series of tests, though, the doctors reported that the baby didn’t have spina bifida. But what exactly was wrong seemed difficult to say. Another diagnosis claimed that the baby had a rare brain deformation called Dandy-Walker Syndrome. Then, finally, the doctors seemed to agree that no, instead it was most likely a disorder called Joubert syndrome, which results in an
Ultimately, though, the problem seemed severe enough that the medical experts advised Brittany to abort at 23 weeks. However, the confusion and changing opinions about the exact diagnosis left the Christian couple with little confidence that abortion was the right choice for them. As a result, they decided to continue with the pregnancy.
Indeed, doctors still were not clear on the the cause of the baby’s problems even after he was born. On August 27, 2014 Brittany had a cesarean section to deliver their baby boy, Jaxon. Doctors warned her that the baby might die during birth. Furthermore, they cautioned that if the baby did survive, even with the help of machines, he may only live for a few hours.
Moreover, when they finally saw their baby in real life, the Buells knew to expect that Jaxon would be small and that his head was underdeveloped. “It was startling, of course,” Brandon told Today. “Then we brought him over to Brittany, and I prepared her real quick before she saw him. I said, ‘Just so you know, his head is small.’”
Not long after his birth, then, doctors decided that Jaxon didn’t have Joubert syndrome after all. After examining the baby, in fact, they concluded that he had anencephaly. However, they were perplexed by the fact that he’d survived and that his brain wasn’t exposed, as is often the case with such a disorder.
According to figures from the Center for Disease Control and Prevention, one in every 3,333 babies born in the United States will have anencephaly, but most will die after birth. With those stark statistics looming over what should have been one of the happiest times of their lives, Brandon admitted to Today that he and Brittany were “emotional wreck[s] every single day.”
“We would cry all the time. He was so amazing, so cute and so precious, our son, and we believed we were losing him any day,” the father admitted. Still, however, the family refused to give up hope.
And they had good reason: even at a few days old, little Jaxon was already beating the odds. He spent close to a month in a neonatal intensive care unit, all the while proving to his parents that he was a fighter. In honor of his amazing spirit, then, they nicknamed their newborn “Jaxon Strong.”
Eventually though, the doctors told the Buells to simply “take him home and make him comfortable.” In his first few months of his life, Jaxon needed to be fed through a tube and also suffered from some seizures. But in many ways, he was able to live just like any other baby.
Then at ten months old, Jaxon’s health took a turn for the worse. According to his parents, their little soldier would not settle and seemed to be suffering from pain that they couldn’t pinpoint. After being told once again that there was nothing their doctors in Florida could do, though, the family took matters into their own hands.
That’s when they decided to seek out the help from Boston Children’s Hospital. Once there, and after six misdiagnoses, the Buells finally discovered that Jaxon was suffering from a rare form of microhydranencephaly. His family described the disorder, moreover, as a “severe and incurable brain malformation.” According to Brandon, while most of Jaxon’s brain is intact, the organ is a fifth of the size it should be.
The new diagnosis seemed to explain Jaxon’s recent bout of discomfort. “Before their first birthday, these children [with microhydranencephaly] normally go through an extreme fit of fussiness. If they’re able to survive it, they’ll settle down and they’re able to communicate with immediate family,” Brandon revealed to Today. “Some children with microhydranencephaly lasted all the way to their 30s.”
Spurred on by this new glimmer of hope, Jaxon’s family decided to share his story with the world. Specifically, through a dedicated “Jaxon Strong” Facebook page, the family celebrated each and every achievement their baby made. And not only did he make it to his first birthday, but he could walk, talk, see and hear – all things he was never expected to do.
Then, in August 2016 Jaxon celebrated his second birthday. The milestone was celebrated beyond the confines of the Buell family, and the toddler received well-wishers from his many supporters on social media. “I know just how the two of you are feeling today. The doctors said my daughter wouldn’t live past two weeks and she will be 21 in December. Much love to all of you,” read one encouraging post.
According to Brandon, meanwhile, Jaxon has changed the family’s life in ways they couldn’t have imagined. “He has certainly made us stronger people,” the proud dad said to Today. “The petty things that used to make us mad, like rush hour traffic or stubbing your toe, it doesn’t faze us anymore because our priorities are so much richer and deeper now.”
And while mom Brittany has admitted that she’s “very aware that today may be his last day,” dad Brandon is hopeful that Jason will have a lasting impact on the world. “He has already touched and inspired more lives in one year than most of us ever will in our lifetime,” he concluded.