Tucker Makes The News

Finding the melody

News - Community News

Written by Ray Weikal

Thursday, 04 June 2009 00:01

Local child with Down syndromeprepares for innovative open-heart surgery Editor’s note: Since April 2006, Sun News has run a series of articles following the family of Todd, Karen and Tucker Bryant and the challenges they have faced with Tucker’s Down syndrome and heart condition. The best gift Todd Bryant will get on Father’s Day is saying goodbye to his son. Bryant’s youngest child, Tucker, will leave his Northland home Sunday, June 21, for cutting-edge surgery to repair his ailing heart. Anna Faltermeier/Sun Gazette — Tucker Bryant hangs out on the coffee table as he watches a sing-along television show May 28 with his parents, Todd and Karen, at their home in Platte City. Tucker will have heart surgery in June in Boston. Since the day Tucker Bryant was born with Down syndrome and a failing heart, he’s never had an easy life. This will be Tucker’s third heart procedure in as many years, so he’s an old hand at this stuff. "He’s a ball of fire," Todd Bryant said. "He finds the melody in everything." For Mom and Dad, though, it never gets any easier. But this should be the last time they go through this ordeal, if all goes well. Karen learned of her son’s condition early in her pregnancy after a check revealed Tucker had too many of the chromosomes that act as the body’s genetic building blocks. Anna Faltermeier/Sun Gazette — Tucker Bryant plays with a toy car May 28 at his home in Platte City. One of Tucker’s favorite things to do is dance. “He’ll dance to anything that has a good beat,” said his mom, Karen Bryant. The couple quickly set aside the abortion option and set about learning how to care for their new child with special needs. It’s a decision Todd and Karen Bryant have never regretted, especially when they watch Tucker hang up his coat, play, laugh and learn in his new life as a student in the early childhood education program in the Platte County R-3 School District. Tucker’s condition makes his parents attuned to these small, satisfying moments. "It’s not very many parents that get to notice those little things," Karen Bryant said. Surgery in Boston Tucker was never supposed to go to Boston, where his upcoming surgery will take place. But last October, the Bryants learned that Tucker’s heart and lung pressure were too high and that the previously planned final operation at Children’s Mercy Hospital was dangerous enough to be cancelled. Then a chance encounter at a Christmas party changed things. Karen Bryant decided at the last minute to attend an event thrown by the Kansas City Down Syndrome Guild. She happened to sit next to Kim Knipp, whose 2-year-old son, Will, had a heart condition similar to Tucker’s. Knipp told Bryant about her son’s progress following a relatively new procedure performed by Dr. Pedro del Nido at Children’s Hospital in Boston. It was a permanently repaired heart, Knipp explained, like a car with a rebuilt engine. Del Nido had found a way to use surgical robots, digital imagers and other techniques to repair congenital heart defects in the tiny, delicate bodies of children like Tucker. Del Nido’s work garnered a $5 million grant from National Institutes of Health. Within a month, Karen Bryant had lined up the procedure for her son. Knipp connected Karen Bryant with a cadre of other moms going through similar experiences. They’ve helped the Bryants sort through the hundreds of small details that demand attention when planning a trip like this. "Since I’ve met Kim, she’s put me in the middle of that network," Bryant said. "It’s been great having those moms." On June 25, the power plant of Tucker’s body — his heart — will be rebuilt. Six weeks of in-patient recovery will follow. The family has hopes for a major celebration when it’s time for his fourth birthday this fall. Despite the pain of surgery, the fear of not getting help to Bryant in time when his oxygen levels fall too low, the millions of dollars in medical bills and thousands natural moments of stress for any parent — despite all that — the little guy’s heart is too strong to give up, and that’s enough to provide the strength needed for his mom and dad. "After a while, you change your mind about wanting to take away your child’s Down syndrome," Todd Bryant said. "You won’t want to change a thing. It makes him who he is." HELPING TUCKER BRYANT To learn more about Tucker Bryant and his family, or to make a donation to help with his medical bills, visit bryantfamilynews.blogspot.com. Staff writer Ray Weikal can be reached at 389-6637 or rayweikal@npgco.comThis e-mail address is being protected from spambots. You need JavaScript enabled to view it .