Babies Who Lived After Being Told They Wouldnt

March 08, 2022 Post a Comment

Florida 'Phenomenon Baby' Built-in Without Most of His Brain Chirapsia the Odds

Doctors didn't think little Jaxon Buell would alive longer than one week.

— -- For Brandon and Brittany Buell, the get-go serious curveball of parenthood came the 24-hour interval after their 17-week ultrasound.

It was the scan where the couple plant out they were having a babe male child, and the day they learned something could be seriously incorrect 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 phone call from the doctor, who told her that her son had spina bifida -- a diagnosis that would later on turn out to be incorrect. The actual diagnosis turned out to be much more astringent.

The ultrasound indicated that the infant's brain was not forming properly. In fact, it was near non-real.

The Buells, who are from Orlando, Florida, said they began seeing specialty doctors, and at well-nigh 23 weeks into her pregnancy, who gently brought up the word "termination."

"We had the selection to terminate in the state of Florida until 24 weeks considering 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 have it one step at a time and went through with the pregnancy.

"If they were to tell me he was going endure, or he would be in pain, or my life was in jeopardy then my thought procedure 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."

"Nosotros're Christian," added Brandon Buell, 30. "And we believe in what nosotros believe in, but nosotros still are going to practise the all-time thing for our family, for Brittany, and ultimately for Jaxon."

When Jaxon was born, the Buells said doctors in the delivery room were non at all confident he would survive the week.

Today, Jaxon is considered a phenomenon baby. At thirteen months old, he is severely disabled, but thriving.

"To us, this just seems normal. We don't accept some other kid, information technology's just him," Brandon said. "To everyone else this might not await normal but it'south normal for our family on a daily footing."

Doctors struggled to diagnose his condition. Finally, ane year afterwards he was born, neurologists at Boston Children's Hospital, a Harvard teaching hospital, came up with a proper diagnosis: Microhydranencephaly

"Micro means small caput, and hydran and cephaly, which we used for Jaxon, means that encephalon 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 stalk 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 whatever futurity development "depends on the medical complications," Olson said.

Jaxon gets nutrition through a feeding tube. "Burping" him involves removing the excess fluid straight from his tum. Even just bathing him requires both parents.

"Nosotros bath him once a twenty-four hour period if he allows us to," Brittany said. "We don't e'er get the gamble to bath him once a day, but information technology takes ii people. And so if only i of us are habitation, nosotros can't give him a bath. Because he hates it and he screams and information technology's not an enjoyable experience for the most function."

Sometimes he suffers from mild seizures.

"Fifty-fifty when he'south really calm he will just he volition become into a slight seizure and we've gotten to where we recognize information technology considering his body gets a fiddling stiff," Brandon said.

But he does make noises and plays with his toys. In fact, how Jaxon is able to meet the blinking lights on his toys is baffling because his cerebrum is then small. And nonetheless his parents, who spend then much fourth dimension with him, are convinced their son is in at that place, responding to their dearest and attending.

"It'southward so beautiful 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 fourth dimension.

"He's just like any other baby," Brittany said. "He's teething and gassy then he's cranky often simply he'south happy. He plays with his toys, he talks to usa and smiles and giggles in his ain little silly way."

The Buells likewise believe their son understands that they dearest him.

"Every day nosotros spend fourth dimension with him. Every day we play with him. Every twenty-four hour period we say, 'I dearest y'all'… probably over a hundred times a day every single day, no exaggeration," Brandon said. "Nosotros telephone call him by his name. Nosotros say, 'Mommy's here, Daddy'due south here. We love you so much, we're so proud of you. You're and then potent, you're so smart.' He hears those every day from united states and certain, maybe I'thousand biased merely I believe that positive reinforcement and talking to him and loving him."

Non only that, only the Buells experience their son loves them dorsum. They say they hear him saying words similar "hello," fifty-fifty if others are skeptical, and say he responds to their attention.

"His favorite affair to do in the morning time is snuggle," Brittany said.

"He'll merely lean into us and he'll catch my arm," Brandon added. "We'll sit there and watch TV together earlier he falls comatose, he responds equally back… Nosotros're just trying to give him the all-time life possible."

A lot of his treatments, including the trip to Boston Children's Hospital, are non covered by insurance. The Buells had to resort to a GoFundMe campaign, which is roofing their out-of-pocket bills for now.

But Brittany and Brandon as well hear from nay-sayers. Whenever they post Jaxon'south 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 ship button, and 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 argue. We were in this because this was our son."

"Every decision that we have ever made for him have been almost his happiness, his condolement, 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 translate that as suffering for their child," Olson said. "For other families, if they're not in physical pain and for some people they experience they tin overcome those challenges and they don't interpret them as suffering."

The Buells are merely ordinary people struggling with an extraordinary brunt, and doing it with love. They believe their son'due south progress might aid the medical community better empathize his condition.

"Jaxon's doing and so well and can teach the medical globe then much and he'south such a miracle that he brings people to Christ, and we've even witnessed it," Brittany said.

"We realize that Jaxon'south life has a purpose," Brandon added. "Whether y'all are faith-based or whether yous merely are scientific and want to run across more nearly 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. Nosotros're probably going to outlive him. At that place's an first-class chance of that," he added. "We're just trying to give him the all-time life possible, knowing information technology could be a short life.

"Every day is precious," he said.