‘He’s no burden, he’s our baby boy’
A little boy born
without most of his brain defies the odds.
 Jaxon Buell. Photo: Facebook
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.
Carolyn Moynihan is deputy editor of MercatorNet.
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