A day after Brandon and Brittany Buell heard that their dream of having a baby boy would be coming true, their doctor called with news that would end their celebration. There were concerns over the size and shape of the baby’s head. Unsure of an exact diagnosis, doctors discussed five different conditions that they thought might be causing the problem, sent the couple to genetic counseling, and gave them the option to terminate.
“I was irritated,” says Brittany, “It made me mad because they were so quick to offer [termination] without even knowing for sure what his diagnosis was. They gave up. We ran all the tests we could. We were 23 weeks along at that point and they told us we had one week left in Florida to terminate.”
The couple returned home and discussed what the doctors had told them and the option to terminate. Though they were sure that they wouldn’t abort their child, whom they named Jaxon, the couple felt a bit lost. Then Brandon had a vision.
Brandon and Jaxon.
“Something inside me, almost like it was coming from Jaxon, was telling me ‘Don’t give up on me’,” explains Brandon, “I remember having a heartfelt, emotional conversation because I felt I was being told that from him, even though we didn’t yet know him and we had to go on blind faith. […] We didn’t feel that was in our hands. If he wasn’t going to make it, God would make that decision.”
Doctors prepared the couple for the worst. They were told that their son might not survive the pregnancy but if he did he probably wouldn’t live long after birth. However, there was still no concrete diagnosis.
Then in August, they welcomed baby boy Jaxon and received an official diagnosis of Lissencephaly, a rare neurological disorder which means his brain doesn’t have the shapes, folds, and curves that it should. Anyone who has Lissencephaly has different outcomes. Some die early. Some live to adulthood. And some have missing fingers and toes and a non-symmetrical face, which is not the case with Jaxon.
“They told us he wouldn’t hear, see, or have any senses,” says Brandon, “He wouldn’t tell us he was hungry. He may not do any of life’s normal luxuries. Early on it was very tough for us. It was tough not knowing what we were gonna get and we could lose him at any time.”
Jaxon spent the first three weeks of his life in the neonatal intensive care unit where he was given a feeding tube and tests were run to try to understand better what challenges Jaxon might face. Doctors there asked the Buells to sign a Do Not Resuscitate form (DNR) but the couple refused. They were adamant that they would always do anything they could to keep Jaxon alive, nurture him, and comfort him. Finally, the family was sent home and Brandon and Brittany were instructed to simply keep Jaxon comfortable. Doctors didn’t think he would live very long.
Brittany and Jaxon
Nine weeks later, Jaxon is twelve weeks old and amazing everyone who meets him. Brittany says:
They told us he wouldn’t be able to crawl or walk or talk. But we’ll put him on his left side and he’ll roll to his right side. He gets on his hands and knees for a minute. He’s already stronger than we ever thought.
The couple began a Facebook page for Jaxon with the family’s new motto: Jaxon Strong. They have yet to find anything that Jaxon can’t do that other 12 week old babies can. He has, what Brandon calls, ocean blue eyes. He laughs in his sleep. So far his major challenge has been seizures, which he has frequently. But his parents say Jaxon is a strong boy with a sweet personality.
The doctors who gave the couple such a bleak outlook for Jaxon are stunned at how alert he is and how he is growing. No one seems to know how to explain it. Even a doctor whom Brandon went toe to toe with for her negativity told the Buells that she was learning so much from Jaxon. He’s proving the naysayers wrong.
Brandon and Brittany say that Jaxon has fulfilled them in amazing ways and helped make them stronger as a couple. If Jaxon could be in the hospital for weeks being poked and prodded, then the couple knows that anything is possible and they themselves can do anything they put their minds to.
“It’s more than inspirational,” says Brandon, “It’s life changing.”
Today, Jaxon still receives nourishment through a feeding tube. He sees nine different specialists including neurology, GI, and ophthalmology. The family of three takes it one day at a time, living with hope, patience, and love. They have received support from around the world and have recently met other families of children with Lissencephaly. As far as why choosing life was so important to them, Brandon says:
Maybe it’s kinda crazy, but you have to look at life from the child’s standpoint. He certainly was alive and existing [in the womb] we just couldn’t see him. I wouldn’t want my parents who loved me enough to conceive me to not give me a fighting chance. As a child he can’t choose for himself. It’s up to the parents to give their child a chance just to make it.
Jaxon is doing more than just making it, thanks to his parents’ support, he’s thriving. And at just 12 weeks old he’s inspiring people around the world to live life to the fullest.
