Benefit planned to help baby receive heart surgery in Boston, Mass.

Posted March 28, 2013 at 5:00 am

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By Julie Ann Madden

Nicknamed the “King of Hearts,” he is the king of every heart who meets the nine-month-old baby boy.

Brayden Waterbury, infant son of Ann (Johnson) and Randall Waterbury of Vermillion, S.D., will have your heart from the moment your eyes meet his bright blue eyes, hear him say, “Hi!” and giggle at you.

“His giggle is precious,” said his mom, who graduated from Akron-Westfield High School in 2004.

He’s a typical boy — the day The Akron Hometowner stopped by, Brayden had one sock on and one sock off and was playing with his favorite toy, a Playskool lion he can put balls in and take out of.

And if he isn’t playing with that, he loves playing with his toy TV remote, said his mom.

“A football (is his favorite toy),” chimed in his dad, who graduated from Akron-Westfield in 2005.

Of course, that could have something to do with his dad being the Westerners’ quarterback when he was in high school.

And his father saying his son’s favorite team is the Green Bay Packers — could be Brayden’s planning on following his father’s footsteps.

“He looks perfectly healthy and normal,” said his mother on a more serious note as Brayden sat on their living room carpet.

“When we found out we were expecting we were extremely excited and couldn’t wait to welcome our first child into the world,” she said. “In April 2012 when I was 32 weeks along, a heart abnormality was noticed in a routine ultrasound.”

The next day they saw a pediatric cardiologist at Sanford Children’s Hospital and learned their baby had a severe heart condition that would require open-heart surgery within six months of birth.

On June 19, Brayden was born. He has an atrioventricular canal defect which is a congenital heart defect.

“AV canal is a complex heart problem that consists of three complications: a small hole in the wall (septum) that separates the upper chambers of the heart, a large hole in the center of the heart where the walls between the upper and lower chambers meet and lastly, an abnormal mitral valve between the heart’s upper and lower left chambers that doesn’t close completely and constantly leaks blood into the heart’s lower chambers,” explained Ann. “In addition, oxygen-rich blood and oxygen-poor blood are mixing through the hole in the septum. These problems make the heart work harder, causing it to enlarge.

“If left untreated, we were told Brayden would die of heart failure,” said Ann.

Although they had hoped Brayden would be six months old and only need one open-heart surgery, in his first three months of life the valve leak worsened, causing his heart to enlarge and fluid began to surround his heart and leak into his lungs.

At 3.5 months, Brayden had his first open-heart surgery, which fixed the holes in his heart and downgraded the mitral valve leak from “severe” to “moderate.”

“Recovery was tough,” said Ann, explaining Brayden was on a pacemaker for three days until his heart became strong enough to beat on its own, and recovery was marked by less and less medicines, monitors, tubing and caregivers. “Day by day he grew stronger and his body became more independent. It was a difficult time but like a true hero, Brayden pushed through and we made it past it.”

“At Brayden’s six-week checkup following the surgery, we were given terrible news,” she continued. “His mitral valve repair had broken down and the valve had begun to leak again. A second surgery was near and we needed to watch him closely for signs of heart failure in the meanwhile.”

“We were trained to watch for these signs immediately after Brayden was born, however, it is still very taxing and worrisome,” said Ann. “We question everything. Things like labored breathing or lack of color can easily throw us into a panic.”

Due to the complexity of the next surgery, the Waterburys are being sent to the nation’s best pediatric cardiothoracic surgeon at the nation’s No. 1 children’s hospital in Boston, Mass.

“His heart is checked every four weeks,” said Ann, “and we never know which appointment will be the one where we schedule the dreaded surgery.”

“A second open-heart surgery brings with it risks of cardiac failure, lung damage, esophagus damage, dependency on a pacemaker and developmental delays,” she said. “We pray Brayden survives the surgery, gets a durable valve repair and has little or no complications.”

“Our little man is a fighter,” said Ann, “and we pray his strength carries him through this next obstacle.”

From 6:30 – 8:30 p.m., Saturday, April 6 at Trinity Lutheran Church in Vermillion, a benefit Spaghetti Feed & Bake Sale is being held for Brayden. Goodwill donations will be accepted.

Brayden is the grandson of Marlys and Randy Johnson and Joanne and Randy Waterbury, all of Akron.

Ann and Randall were both very active during their high school years at Akron-Westfield. She was a cheerleader and participated in Danz Squad, band, choir, speech, the Talented And Gifted program and the National Honor Society. Randall was on the Honor Roll and active in sports, including football, wrestling, golf and baseball.

After graduating from high school, Ann and Randall graduated from the University of South Dakota. Ann has a masters of business administration and is employed in USD’s Office of Research as a grant specialist. Randall has a bachelor’s degree in business and is employed at Masaba Inc. as a scheduling manager.

Ann is a member of the Vermillion Area Dance organization’s Board of Directors and is one of their dance teachers. They are both members of the Little Mended Hearts and Children’s Miracle Network.

They are also members of Trinity Lutheran Church in Vermillion, S.D.

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