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Brianna Barner: Life's Twists Stun, Inspire Healthcare Family
By Sherry Metzger  Tiny Brianna Barner of Atlanta,
Georgia, slowly crosses the finish line as her parents'
eyes gleam with pride. Their joy is heightened as they remember the
battles fought as a family to reach this moment, including moving
across the country and disregarding doctors who took one look at
Briannas club feet at birth and said she would never walk.
Today Brianna is all smiles as she unknowingly proves that
prediction wrong. Brianna walked the 75-yard All Kids Can Race
event November 10, 2007, in front of Turner Field in Atlantaa
fundraiser benefiting the Childrens Healthcare of Atlanta
Foundation. She held her father's hand the whole way.
Crossing the finish line at the CVS/pharmacy Strong Legs Run in
shoes built by her father, prosthetist Karl Barner, CPO, this
two-year-old beams with delight at the attention she receives and
proudly displays her participation ribbon.
Whether it's fate or irony, as a CPO Brianna's father was well
positioned to care for his daughter, splinting her legs at birth
and building orthotic braces and shoes for her over time. "She was
born with some of the most severe club feet Ive seen," Karl says.
"We knew halfway through my wife's pregnancy that she had club feet
and hand problems, so we were somewhat prepared. But we didn't know
how severe her feet were. I was used to dealing with simple club
feet in my practice, but I never had to deal with a situation this
complex."
Brianna was born with a rare congenital disease termed
arthrogryposis, characterized by a shortening of joint muscles and
tendons. She also has a form of myopathy causing muscle weakness.
"Her doctors call her Floppy," Karl says, referring to Brianna's
hyper-mobile hips and knees and hyperextended wrists.
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Photographs courtesy of the Barner family. |
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In another ironic twist, Brianna's mother, Lisa
Barner, is an occupational therapist (OT) who had written the
senior project for her OT degree on arthrogryposis. When she found
out about her baby's condition, Lisa referred back to her
schoolbooks and term paper to prepare herself and says the
information she found on the Internet scared her.
Shortly after birth, Lisa was allowed a brief look at her
daughter when a nurse, keeping Brianna's feet covered, whisked the
baby away to an intensive-care unit (ICU). "By the time I was able
to see her, she had made improvement and Karl had splinted her
legs," Lisa says. "At first I felt like I forgot that I was an OT.
I was her mom, and I had all the emotions that went along with
dealing with a child who has physical limitations. It was several
months before I started thinking like an OT and using some of my
knowledge and experience to work with her development."
Though Lisa isn't currently practicing as an OT, she says she
uses her abilities at home to care for Brianna. "I hope to return
to work in the future in pediatrics," she says. "I think when I go
back to work I will be much more able to understand the parents'
point of view and will hopefully be better at supporting them."
Both knowledgeable and resourceful, the Barners struggled to
find appropriate healthcare for Brianna in their remote city. "We
were living in Anchorage, Alaska, at the time and there wasn't a
doctor near us who specialized in arthrogryposis," Karl explains.
"My wife had to fly to Seattle with Brianna several times for
serial casts and an Achilles tendon release. They would fly out in
the morning, Brianna would have a brief medical procedure, and then
they'd fly home that night. It was a very trying and challenging
time for our family, but Brianna was our inspiration. She has gone
above and beyond what we ever thought she would."
In 2007, the Barners made the difficult decision to leave their
dream home in Alaska and move to Atlanta for Brianna's benefit. "In
addition to inadequate healthcare in Alaska, the temperature
aggravated Brianna's vascular problems. We couldn't go outside or
do much," Karl says. "I'm very grateful to be in Atlanta, where
excellent medical care is 14 miles away. Parents have to seek the
best care for their child and be proactive."
Lisa adds, "I would recommend that parents stay away from too
much Internet surfing. Talk with other parents for support, get
involved with support groups, and follow your gut. Realize you need
to be your child's advocate and don't settle for a doctor that you
are not comfortable with."
The Barners found state programs for assistance with therapy,
such as Babies Can't Wait (BCW), a Georgia government initiative
for infants and toddlers with developmental delays or disabilities
and their families. BCW, and programs like it nationwide, enable
children "access to services that will enhance their development,"
according to BCW.
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Brianna and her brothers, Austin (left) and Andrew, pose in the Barner's yard. |
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"We don't have all the answers, and we're both
educated in this type of care," Karl says. "There's a lot of
support out there; you just have to ask. If you don't ask for help,
you might feel alone sometimes."
The frustrations with healthcare options and feelings of
isolation have subsided greatly since their move, yet limited
insurance coverage still provides challenges. "I have to fight for
coverage for my daughter as a parent and for my patients as an OT,"
Lisa says. "Insurance seems to look at everything as an acute
problem, not realizing that Brianna will have challenges and will
be able to benefit from therapy for years to come."
However, Brianna's recent accomplishments make these battles and
family sacrifices worthwhile. The two pairs of AFOs that Karl has
fashioned for his daughter have helped her integrate into daily
family activities. In particular, Brianna enjoys being able to play
with her two older brothers, Austin, eight, and Andrew, five. "For
a long time she received all of the attention," Karl says. "The
boys were a little jealous. But now that she's mobile, she's able
to roughhouse with them and participate in simple household
chores."
"She works hard to take part in what the rest of the family is
doing," Lisa adds. "She is great at problem solving and figuring
out ways to do things so she can get the job doneshe just may do it
a little differently than other children her age. She has taught me
patience and persistence."
Following a recent family dinner, Brianna carried the butter
container from the dining table to the kitchen as the family
watched in awe. "She had just learned to walk a couple days before.
It was so inspirational to see her just get up and walk by
herself," Karl says.
As a CPO, Karl's goal is to provide the best services and
equipment for every child in his practice. But the irony doesn't
escape him that his own daughter would require his skills. "We
debated about having a third child before we had Brianna," he
recalls. "We considered adopting a child with physical problems
because we're in the unique situation to help someone like that. In
some ways, Brianna was an answer to our prayers. We felt like we
could help this type of child, and that's what God gave us. We have
her for a reason."
Sherry Metzger, MS, is an anatomy and physiology professor
and a freelance writer. She is based in Westminster, Colorado, and
can be reached at sherry@opedge.com 
Table Of Contents - April 2008
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