After heart surgery, Archdale boy helps others

Jan. 11, 2014 @ 03:45 PM

Issac Simmons has an important job.
Outside of riding his bike, being good at art and participating in events around Archdale, that is.
The 6-year-old first-grader at Archdale Elementary has been named the North Carolina diplomat for Hearts without Boundaries, an organization dedicated to providing cardiac care to children with heart defects in Cambodia. As a diplomat, Issac raises funds and brings awareness to children who need heart surgery in Cambodia.
“It’s good, and we raise money for people who have broken hearts in Cambodia,” Issac said.
Issac seems to be the perfect spokesperson for the organization because he was born with tricuspid artesia, a type of congenital heart disease in which the valve between the right atrium and right ventricle fails to develop.
“He is doing wonderful now. He is in the first grade, but he is amazing. He is above and beyond what we would ever expect at 6 years old,” said mother Elizabeth Simmons.
His parents found out about Isaac’s condition during a routine ultrasound at 18 weeks gestation.
“Issac was our first baby. I remember that day. We were so excited to see if it was going to be a girl or a boy,” Simmons said.
She said the doctor came in and told them there was something wrong with his heart.
“This was supposed to be a happy day for us,” Simmons said. “We knew he was going to have a special heart when he was born.”
Issac has been through many difficult surgeries. At 5 weeks old, he had a pulmonary shunt and band placed in his heart.
At 5 months old, he had the Glenn procedure, a surgery which connected his superior vena cava to the right pulmonary artery.
Sometime after that, he had a stroke that caused weakness on his left side.
At age 3 he had a Fontan procedure, which involved diverting the venous blood from the right atrium to the pulmonary arteries without passing through the morphologic right ventricle. His mother said he had some complications after the surgery that caused him to be in and out of the hospital with chest tubes for three months and was on a special diet for a year.
“It was hard to keep up with a 3-year-old and 1-year-old while trying to cook food I have never done before,” she said.
Simmons said Issac has found support in his Mended Little Hearts group, a support group for families with children who have congenital heart defects. The local branch of the group is called the Tinman Club and is based out of Winston-Salem.
“It is good have a mended heart. I have my Mended Hearts friends, and we go places all the time. I like it because they have zippers like me.”
The “zippers” refers to the scarring on the chest common with people who have undergone open-heart surgery.
Issac has play dates with the other members and goes to Mended Heart parties and visits Mended Heart friends when they have surgery.
“Since he was a baby, I have been talking with other parents who have (children with) heart defects,” Simmons said. “We have made sure that Issac knows that there are other kids like him so that he knows he is special, but he is not the only mended heart in the world. I think that these kids just have an automatic bond and camaraderie that we will never understand.”
Issac also is in a Boy Scout Troop and plays tee ball despite his challenges. According to his mom, he is excited to tell people that he has a mended heart and shows off his “zipper.”
“He knows that he is different and that he can’t do some things,” Simmons said. “We keep telling him that he may not be good at running and jumping, but he is good at other things. We just have to remind him yes there are things that he can’t do but there are so many other things that he does so well.”
Statistically, only 20 percent of children with Issac’s heart make past the age of 5 and only 15 percent of those 20 make it past the age of 15, according to Simmons.
“We feel like it is our job to make every single minute count with him,” she said. “We want every day to be a special day for him. We kind of feel like he was given to us with an expiration date, so we want to make sure that his quality of life is amazing  and that every day is the best day that we could give to him.”
cdavis@hpe.com | 888-3657