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Ian Johnson

Repaired Heart Defect Doesn't Slow This Young, Energetic Boy 

As 6-year-old Ian Johnson dribbles down the soccer field, ball at his feet, Ian is just like any other 6-year-old. He's full of energy, he hasn't tried a sport he doesn't love, his favorite foods are cheeseburgers and fries and he enjoys annoying his big sister. What Ian hides so well behind his bubbly personality and endless energy, is a rare heart defect and multiple surgeries that consumed much of the first three years of his life.

Ian doesn't have time to let a heart defect slow him down. He's a busy kindergartner with a soccer game to play, a baseball practice to catch and a rock band that he wants to start with his friends. (No matter that he doesn't play an instrument.) His mother, Colleen Johnson, says that Ian is such an active, happy boy, that sometimes even she forgets that Ian has a heart problem. "When he's with his friends, he just blends in with everyone else," says Colleen. "He's just as tough as the kid next door."

Ian was born with a complex and rare heart condition called hypoplastic left heart syndrome or HLHS that affects just one in 10,000 children. The condition prevented the left side of Ian's heart from fully developing, thereby restricting his heart's ability to pump oxygenated blood to his vital organs. Without intervention, hypoplastic left heart syndrome is uniformly fatal within the first weeks of life.
Born on Nov. 19, 2001, Ian was immediately transferred to Children's pediatric intensive care unit. Colleen and husband Mitch had to choose between a heart transplant or an innovative series of open heart surgeries that would build Ian a new heart called the Norwood procedure. The Johnsons decided to put their trust in the expertise of Kim Duncan, MD, director of cardiothoracic surgery at Children's Hospital and chief of cardiothoracic surgery at the University of Nebraska Medical Center.

Just one week after Ian was born, he underwent his first surgery to begin repair of his tiny heart. After 65 days in the hospital following surgery, Ian was able to come home for a week before he returned to Children's again for the second stage of the Norwood procedure.

The surgery went well, but Ian's condition turned fragile. With prayers and support, the Johnson family kept a vigil at Ian's bedside as he recovered. On May 19, 2004, his third and final surgery was performed by Dr. Duncan. The procedure was flawless and upon dismissal from the hospital, Ian was able to go home with his family for good. A swallowing problem required Ian to use a feeding tube for most of the first three years of his life. This was followed by speech therapy to help him catch up on his speech development. With the worst behind him, Ian has continued to grow and thrive and is well on his way to living a normal life and being "just a kid."

"He has always been about six months behind others his age," says Colleen. "But his teachers say he has caught up now and is on track intellectually."

Today, the only residual affects of the surgery are the T-shaped scar he wears on his chest and two medications he must take daily - an aspirin and a diuretic. His heart condition may also affect his endurance and stamina, but Colleen says that so far, she hasn't seen it. He kept up with everyone on the basketball court this winter, she says, and in soccer, he's often leading the pack. He also plays baseball, golf and swims. And when he's not playing organized sports, he's busy trying keep up with his two older brothers, Tyler and Nate.

"We feel very blessed," says Colleen, who says they named their son Ian because it means a gift from God. "He truly is a gift."

Colleen says the medical team at Children's has been an important part of Ian's recovery. "The people at Children's have been so dedicated and compassionate," she says. "They've always been there when we needed them. They've laughed with us and they've cried with us and most importantly, they've been honest. Ian wouldn't have made it here without all of the caring, knowledge, tenacity and support from doctors and staff at Children's. Children's has touched our lives and made us a better family. The Omaha community is truly blessed to have such a wonderful facility and staff."