<img style="float: right;" src="https://opedge.com/Content/OldArticles/images/2008-04_11/TodaysCons-1.jpg" hspace="4" vspace="4" /> <b>Tiny Brianna Barner of Atlanta, Georgia,</b> 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. <table class="clsTableCaption" style="float: right; width: 36.1809%;"> <tbody> <tr> <td style="width: 100%;"><img src="https://opedge.com/Content/OldArticles/images/2008-04_11/TodaysCons-2.jpg" alt="Photographs courtesy of the Barner family." /></td> </tr> <tr> <td style="width: 100%;">Photographs courtesy of the Barner family.</td> </tr> </tbody> </table> 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. <table class="clsTableCaption" style="float: right; width: 31.4728%;"> <tbody> <tr> <td style="width: 100%;"><img src="https://opedge.com/Content/OldArticles/images/2008-04_11/TodaysCons-3.jpg" alt="Brianna and her brothers, Austin (left) and Andrew, pose in the Barner's yard." /></td> </tr> <tr> <td style="width: 100%;">Brianna and her brothers, Austin (left) and Andrew, pose in the Barner's yard.</td> </tr> </tbody> </table> "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." <i>Sherry Metzger, MS, is an anatomy and physiology professor and a freelance writer. She is based in Westminster, Colorado, and can be reached at <a href="mailto:sherry@opedge.com">sherry@opedge.com</a></i>
<img style="float: right;" src="https://opedge.com/Content/OldArticles/images/2008-04_11/TodaysCons-1.jpg" hspace="4" vspace="4" /> <b>Tiny Brianna Barner of Atlanta, Georgia,</b> 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. <table class="clsTableCaption" style="float: right; width: 36.1809%;"> <tbody> <tr> <td style="width: 100%;"><img src="https://opedge.com/Content/OldArticles/images/2008-04_11/TodaysCons-2.jpg" alt="Photographs courtesy of the Barner family." /></td> </tr> <tr> <td style="width: 100%;">Photographs courtesy of the Barner family.</td> </tr> </tbody> </table> 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. <table class="clsTableCaption" style="float: right; width: 31.4728%;"> <tbody> <tr> <td style="width: 100%;"><img src="https://opedge.com/Content/OldArticles/images/2008-04_11/TodaysCons-3.jpg" alt="Brianna and her brothers, Austin (left) and Andrew, pose in the Barner's yard." /></td> </tr> <tr> <td style="width: 100%;">Brianna and her brothers, Austin (left) and Andrew, pose in the Barner's yard.</td> </tr> </tbody> </table> "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." <i>Sherry Metzger, MS, is an anatomy and physiology professor and a freelance writer. She is based in Westminster, Colorado, and can be reached at <a href="mailto:sherry@opedge.com">sherry@opedge.com</a></i>