(ABC) – For Brandon and Brittany Buell, the first serious curveball of parenthood came the day after their 17-week ultrasound.
It was the scan where the couple found out they were having a baby boy, and the day they learned something could be seriously wrong with his health.
“The ultrasound tech was acting strange,” said Brittany Buell, 27. “She got really quiet and when she got to his head and was measuring it. She didn’t say a word.”
The next morning, Brittany said she got a call from the doctor, who told her that her son had spina bifida — a diagnosis that would later turn out to be incorrect. The actual diagnosis turned out to be much more severe.
The ultrasound indicated that the baby’s brain was not forming properly. In fact, it was almost non-existent.
The Buells, who are from Orlando, Florida, said they began seeing specialty doctors, and at about 23 weeks into her pregnancy, who gently brought up the word “termination.”
“We had the option to terminate in the state of Florida until 24 weeks because of medical reasons,” Brittany said.
The Buells asked the doctors if the baby was suffering, was he in any sort of pain. The doctors said no.
So the Buells decided to take it one step at a time and went through with the pregnancy.
“If they were to tell me he was going suffer, or he would be in pain, or my life was in jeopardy then my thought process might have been different,” Brittany said. “But at the time they said we wouldn’t have to worry about any of that so we didn’t.”
“We’re Christian,” added Brandon Buell, 30. “And we believe in what we believe in, but we still are going to do the best thing for our family, for Brittany, and ultimately for Jaxon.”
When Jaxon was born, the Buells said doctors in the delivery room were not at all confident he would survive the week.
Today, Jaxon is considered a miracle baby. At 13 months old, he is severely disabled, but thriving.
“To us, this just seems normal. We don’t have another child, it’s just him,” Brandon said. “To everyone else this might not look normal but it’s normal for our family on a daily basis.”
Doctors struggled to diagnose his condition. Finally, one year after he was born, neurologists at Boston Children’s Hospital, a Harvard teaching hospital, came up with a proper diagnosis: Microhydranencephaly
“Micro means small head, and hydran and cephaly, which we used for Jaxon, means that brain tissue is replaced with fluid,” said Dr. Heather Olson, a neurologist who evaluated Jaxon in August at Boston Children’s.
Olson explained that “most of his brain” never formed. He has a functioning brain stem which allows him to breathe on his own and his organs to function, but Olson said she doesn’t believe Jaxon will be able to talk or walk independently.
There is no prognosis. Doctors are surprised he has made it this far and any future development “depends on the medical complications,” Olson said.
Jaxon gets nutrition through a feeding tube. “Burping” him involves removing the excess fluid directly from his stomach. Even just bathing him requires both parents.
“We bath him once a day if he allows us to,” Brittany said. “We don’t always get the chance to bath him once a day, but it takes two people. So if only one of us are home, we can’t give him a bath. Because he hates it and he screams and it’s not an enjoyable experience for the most part.”
Sometimes he suffers from mild seizures.
“Even when he’s really calm he will just he will go into a slight seizure and we’ve gotten to where we recognize it because his body gets a little stiff,” Brandon said.
But he does make noises and plays with his toys. In fact, how Jaxon is able to see the blinking lights on his toys is baffling because his cerebrum is so small. And yet his parents, who spend so much time with him, are convinced their son is in there, responding to their love and attention.
“It’s so cute when he gets so proud of himself,” Brittany said. “He grins.”
His parents say he talks to them and is happy almost all of the time.
“He’s just like any other baby,” Brittany said. “He’s teething and gassy so he’s cranky often but he’s happy. He plays with his toys, he talks to us and smiles and giggles in his own little silly way.”
The Buells also believe their son understands that they love him.
“Every day we spend time with him. Every day we play with him. Every day we say, ‘I love you’… probably over a hundred times a day every single day, no exaggeration,” Brandon said. “We call him by his name. We say, ‘Mommy’s here, Daddy’s here. We love you so much, we’re so proud of you. You’re so strong, you’re so smart.’ He hears those every day from us and sure, maybe I’m biased but I believe that positive reinforcement and talking to him and loving him.”
Not only that, but the Buells feel their son loves them back. They say they hear him saying words like “hello,” even if others are skeptical, and say he responds to their attention.
“His favorite thing to do in the morning is snuggle,” Brittany said.
“He’ll just lean into us and he’ll grab my arm,” Brandon added. “We’ll sit there and watch TV together before he falls asleep, he responds equally back… We’re just trying to give him the best life possible.”
A lot of his treatments, including the trip to Boston Children’s Hospital, are not covered by insurance. The Buells had to resort to a GoFundMe campaign, which is covering their out-of-pocket bills for now.
But Brittany and Brandon also hear from nay-sayers. Whenever they post Jaxon’s photos and videos online, they often receive hurtful comments.
“We can’t fathom what kind of people would, one, think that about an innocent child, especially one with special needs, and two, actually hit the send button, so we just don’t have time for it,” Brandon said. “We really don’t care. We never were in this for any kind of controversial topic or a pro-life, pro-choice debate. We were in this because this was our son.”
“Every decision that we have ever made for him have been about his happiness, his comfort, no matter what that meant and no matter what the cost,” Brittany said.
When asked if Jaxon is suffering, Dr. Heather Olson said she didn’t think so. But, she admitted, everyone has their own definition of suffering.
“Some people, the idea of having lots and lots of doctors’ visits and the possibility of hospitalizations has a negative impact on quality of life and they would interpret that as suffering for their child,” Olson said. “For other families, if they’re not in physical pain and for some people they feel they can overcome those challenges and they don’t interpret them as suffering.”
The Buells are just ordinary people struggling with an extraordinary burden, and doing it with love. They believe their son’s progress might help the medical community better understand his condition.
“Jaxon’s doing so well and can teach the medical world so much and he’s such a miracle that he brings people to Christ, and we’ve even witnessed it,” Brittany said.
“We realize that Jaxon’s life has a purpose,” Brandon added. “Whether you are faith-based or whether you just are scientific and want to see more about medicine and learn more about the human brain.”
“At the same time we, better than anybody else in our situation, realize the reality of Jaxon. We’re probably going to outlive him. There’s an excellent chance of that,” he added. “We’re just trying to give him the best life possible, knowing it could be a short life.
“Every day is precious,” he said.