Jaxon Buell.Posted on 10/01/2015 6:57:48 AM PDT by wagglebee
Jaxon Buell.
Baby photos are always a winner on Facebook, but there is one infant whose pictures are melting the hearts of hundreds of thousands as his story spreads through the social networking site and mainstream media.
On the Jaxon Strong Facebook page, Jaxon Emmett Buell’s big blue eyes look out from his chubby face in a way that conquers the heart before the mind has time to object to the size and shape of his head. The little Florida boy was born with anencephaly, a severe neural tube defect which means that most, if not all of the cerebral cortex and the corresponding part of his skull are missing.
His mom and dad, Brittany and Brandon Buell, discovered there was something seriously wrong with their unborn baby’s development after Brittany’s second ultrasound scan at 17 weeks. Doctors were unsure of the exact diagnosis but the prognosis was dire: Jaxon might not survive, or if he did, only with profound disabilities. As is routine, they offered the couple a termination.
But the Buells believed that their baby was going to make it. Experts assured them the baby wasn’t in pain and that there were no added risks to Brittany’s health. In any case both their natural instincts and their religious faith made them unwilling to “play God” by deciding to end the life of the child they had been given. It “was our job to give him a chance to live,” Brandon later wrote.
And live he does; the little battler is now 13 months old, to the surprise of experts. At first the doctors thought he would die within a two weeks, then a couple of months, then two years, Brittany told Fox News. “Now they say they don’t know. Jaxon is writing his own book.”
It’s true that both baby and parents have had a difficult time of it. Brandon admits that the first sight of his son was “a bit startling and sobering”. During the first few months Jaxon was hospitalised multiple times for feeding tube issues and two bouts with a virus.
This past summer, in addition to normal teething troubles and fussiness, he developed serious gastrointestinal issues and seizure like episodes. Doctors tried more than a dozen drugs and 11 types of formula, but nothing seemed to help. In early August he was admitted to hospital in Orlando, but the doctors there ran out of ideas.
The Buells, however, were not giving up their efforts to improve their son’s quality of life. They decided to throw themselves on the mercy Boston Children’s Hospital, one of the premier facilities of its kind in the US, and simply turned up in the emergency clinic there with Jaxon in August.
At Boston they got the current, more precise diagnosis of his condition (microhydranencephaly), and a new medicine recommended by the doctors there is helping the little boy sleep better. A story on the Boston Globe’s website boosted their media profile and brought increasing support.
Recently Brandon has written: “He’s back to smiling at us, always so happy in the morning after he wakes up and takes turns looking at both Mommy’s and Daddy’s face, seemingly as if he is so excited to start another day.” He says “mama” and “dada”, scoots along the floor, and his mom and dad believe that if he can get through the irritable stage he will have a lot more life ahead of him.
One thing is clear: they love their little boy to bits, and can’t fathom why some people through the social networks have criticised their decision not to abort the child.
“It’s baffling to hear or see other people’s opinions on our baby that have never met him, that somehow know how he thinks, how he acts, how he feels, how much of what he does is voluntary or involuntary, how he is always in pain, and that we are selfish parents for not choosing to have an abortion, and for having a Facebook and a Go Fund Me page for him,” wrote Brandon.
The GoFundMe page was set up by a former colleague of Brandon’s to help the Buells with medical expenses, explained Brandon, as well to allow Brittany to stay home with Jaxon, who does best when he’s cared for by his mom.
'Had there been any suffering in the womb or a danger involved other than Jaxon possibly not being able to live outside the womb because of the concern for his head and brain, then we certainly would have had a different discussion,” continued Brandon.
“Truthfully, I will never understand how choosing to carry Jaxon and give him a chance to survive could ever be considered ‘selfish,’” he added.
The overwhelming response, however, has been positive and warm. Nearly 195,000 people have “liked” the Facebook page Jaxon Strong, and hundreds of families with similar stories and struggles have contacted the Buells. The couple hope that Jaxon’s story will advance medical research and help more families in the future. Brandon writes:
“We believe the medical world will also benefit from Jaxon’s story, from his rare neurological condition, and from his diagnosis, because we are certainly seeing firsthand how much there is still to learn about the human brain. We plan to work with the top infant neurological teams in the country, if not the world, for all of these benefits, and we keep our focus as broad as we possibly can so that Jaxon’s story does not end with Jaxon.”
He continued: “No matter who you are or what you believe in, it’s clear that Jaxon’s tiny footprints will have a lasting impression on this world, and that he has already touched and inspired more lives in one year than most of us ever will in our lifetime.”
As Jaxon’s story continued to spread across the internet this week it was obvious that there is a lot more encouragement outside hospitals and doctors clinics for parents accepting a disabled baby than inside them.
No doubt doctors think they are sparing the parents (and outside the US, the public health system) a terrible burden when they present them with the abortion “option”, but they don’t take into account the love and strength that wells up in a mother’s or father’s heart in response to an especially vulnerable little human being. To paraphrase the familiar song, “He’s no burden, he’s my baby boy.”
Looking at Jaxon’s pictures also exposes the fallacy of the notion that “you are your brain”, and that, when your brain stops functioning normally, or a large part of it is missing, you are not a person. No-one who contemplates without prejudice the image of that child with his head lying sweetly on his mother’s shoulder could deny that there is a little person there. Let’s stop judging people by their mental and physical constitutions and accept every human being as an equal member of the human family.
One last thing: it is not necessary to be religious in order to see wounded brothers and sisters like that, but as the Buell’s case illustrates, it certainly helps.
He’s so cute! And those cheeks! I wanna pinch them. God bless the Buells.
American men really have to take back the baby-naming job.
Not to compare the extremes, but to make a point, I had a head injury seven years ago. Just last year one aspect of the damage healed. That was SIX years later. My typing went from 16wpm for a number of years back to almost 100wpm, like before.
The brain is amazing and I hope neuroplasticity helps this child have a great and wonderful life, realizing the seriousness of his illness.
Plus he is only a year+ old, and technology is moving at lightning speed. Chip implants to help him along? maybe, in the future?
Certainly many trials ahead for the child and family, but hopefully their capacity to love (and our prayers) will see them through.
22 posts and not a single Joe Biden joke.
I’m proud of yinz!
Cute.
But entirely unfair to this child. Demonicrats were gifted at birth with fully functioning brains ... and chose to do evil with them.
This child's problems are not his own fault.
Aren’t they going to put something in his head to make a skull? His head looks so vulnerable to injury like that.
He may be too young for that.
I have a relative who had a massive stroke. She has slowly recovered her ability to speak (with some limitations, including memory) and although paralyzed on one side, can also walk with an assist, do limited household chores and continue some church activities, including singing. Her husband says that scans have shown “half her brain is just gone.”
Doctors have tsked and assumed the family would put her in a home. Instead, her husband set up home care for the first couple of years and then cameras so he can watch her from work, and her extended family rallies around to take her on errands or for entertainment. She carries on loving family members, making phone calls, writing notes, planning get-togethers, laughing at the right places in movies, taking care of the family pets and generally being the same loving self she always was (but didn’t have as much time to be) when she was a powerhouse workaholic.
I’m not saying it’s been easy. But it’s been a blessing. She has lived to see both her children marry and have children of their own. Although she can’t care for the grandchildren, she does relate to them lovingly when they come by the house, and they to her.
Life. It’s not ours to dispose of carelessly.
I thought it was funny. It wasn't directed at the child. The OffenseMobile makes its rounds and more and more people jump on.
Sometimes God creates and sometimes God takes. We cannot understand why someone is born challenged or why a life may be taken “too early” in our view or in a tragic way. Why did she die of cancer? Why was he shot and killed? Why were they born so gifted? Why are they rich and famous?
The truth is that we are all to small to understand what the Creator has done many times. My view is that God does things many times because those things are for the people that are affected by the event. In this case the child has touched the parents and those around him and taught them things they would never have learned. God also brought to us the people that had the gifts to invent the technology that can tell this child’s story to the rest of us using what you are looking at right now.
Beautiful eyes. God given.
That would be my guess.
Bump worthy.
That's what I'm thinking. When he's 18 and Six Three and 210. I'm sure Riddell will be honored to make him a helmet.
I’m overwhelmed! I had thought anencephaly invariably resulted in death shortly after birth. Seeing that precious little boy’s eyes and smile, and hearing that he’s more than a year old, made my heart leap for joy. There is no question that he is fully a person and that he is not in chronic pain. Thank you, Lord, for putting him among us. He is a gift not just to his parents, but to all of us!
I am sure he has a skull. That condition damages neural development and not bones. The shape of the skull has just compacted in to match the shape of what is inside.
“And with beautiful blue eyes.”
Those eyes are striking. He might not have much of his brain but what is there is clearly very active. You can see it in his eyes.
Yes, you can.
moistened eyes in cubicle at work... God - bless this little guy in his life. Please Father. He is much more than a sparrow.
Wow
Poor thing
God love him
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