In Robby Gordon Sampson’s short life, he has faced and won more challenges than the average six-year-old.
Robby has tetralogy of fallot, a combination of four heart defects present at birth. After his birth on February 14, 2004; the doctor discovered Robby had a heart murmur. Robby’s pediatrician then ordered additional testing, and three tests in about five hours led to the diagnosis of tetralogy of fallot.
“When I was first told that Robby had tetralogy of fallot, I was afraid, but I knew we had to push forward,” said Valerie Guse, Robby’s mother. “Kids are kids, and they’re resilient. They can handle things that adults can’t.”
Robby needed 24-hour attention at home. His condition altered his feeding and nursing schedule. He also had to be in a clean and smoke-free environment, so they spent most of their time at home.
“His life was being run by a machine and nurses, which you can’t control, it’s an emotional struggle,” Valerie said. “But there’s highs when you’re done.”
He had his first surgery at four months and 12 pounds. The operation closed his atrial septal defect, corrected his aorta and replaced his pulmonary valve with a valve from a pig’s heart. Robby began crawling two weeks after the surgery, and he started to walk at eight months.
When Robby was three doctors found that his pulmonary valve was constricted so he needed another heart surgery. Though Robby has had two heart surgeries, Valerie has kept him in school and active. Robby especially enjoys playing baseball and soccer.
“We have never treated him different,” Valerie said. “We never hold him back.”
Robby has also fit in at school and with his peers. “I didn’t know at first,” Arlene Schindeldecker, Robby’s kindergarten teacher, said about Robby’s condition.
He will play games with his classmates and participate in the class activities. Occasionally, he slows down. Valerie keeps Arlene informed on what to watch for and how Robby is doing.
“It’s been great having Robby,” Arlene said.
The student body also showed their support for Robby when they participated in a Jump Rope for Heart fundraising event for the American Heart Association. Valerie gave the students a Power Point presentation about Robby’s condition.
“A lot of kids came up to Robby,” Arlene said. “The older ones were touched.”
Several of Robby’s classmate said he was brave for dealing with his heart problem.
When asked what it means to have a healthy heart, Robby’s friend Noah responded, “to have your heart all working.”
Valerie has helped her son learn about his condition, and Robby is able to talk about it. She said it’s an opportunity for him to learn about science.
“I have a whole in my heart,” Robby said. When asked how the doctors helped his heart, he said, “he put tape on it.”
Valerie and Robby have participated in the Heart Association’s Start! Heart Walk since Robby was one. “It’s good for Robby to see others like him,” Valerie said.
She encourages other parents with the same challenge to persevere through the ups and down and to seek support in the process.
Robby will need his pulmonary valve replaced every two to four years. “Until then, we will continue to help him pursue and goals, dreams and aspirations he may have,” Valerie said.
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