Advocating for Other Heart Warriors Helps Jameson’s Family Thrive


Being diagnosed at two days old with Tetralogy of Fallot right as the COVID-19 pandemic begun caused Jameson’s parents a great deal of fear and anxiety. Since those early days, Jameson’s mom, Jamie, has managed the fear by educating herself about congenital heart disease (CHD) and becoming an advocate for her son and other kids experiencing the same thing.
Jameson had open heart surgery at 5 and a half months old to repair a hole in his heart and spare a heart valve. Jamie said she never questioned the excellent care they received at Children’s Cardiology and Heart Center, and she appreciated the support they received through the process.
“I was worried about the surgery because you don’t always get to meet the surgeon, but Jameson’s surgeon didn’t make me feel badly for wanting to just lay eyes on him,” she said. “Everyone from the nurses and doctors to the support staff and the hospital chaplain never made you feel like you were in the way or were a bother when you wanted to ask a million questions. We got every kind of support we needed.”
Jameson will be 5 in March, and he sees pediatric cardiologist Neill Videlefsky, MD, at Children’s Cardiology Lawrenceville clinic. Although he was moved to bi-annual checkups last year, Jamie requested he return to annual monitoring after her brother passed away unexpectedly of a heart condition.
Jamie said becoming more knowledgeable about her son’s condition and getting involved with other CHD families calmed many of her fears and helping others gave her a feeling of empowerment.
“Since the day Jameson was born, and I found out I could advocate for him, I have. We attend conferences, Kids at Heart monthly family dinners, and we’re currently in the works for a new adventure with Children’s Miracle Network,” Jamie said.
Expanding her knowledge about CHD and sharing it with other families has been important to her.
“Had I known more about heart disease before Jameson was born, I probably would’ve been more prepared for certain things, but you really don’t know until you’re in the situation yourself,” Jamie said. “For example, I knew that my grandfather had something wrong with his heart, but my family never really talked about it. It’s important to me to be there for other parents going through the same thing to let them know there’s help and support out there in their time of need.”

Her involvement with groups like Kids at Heart benefits Jameson as well because he gets to meet friends who are heart heroes just like him. He’s enjoyed outings with Kids at Heart like going to the Atlanta Zoo and the monthly dinners at the hospital. Jameson loves playing baseball, Lego trucks, and he’s excited about attending Kindergarten and riding with his brother on the “big boy bus” in the fall.
Being connected to other heart warrior families continues to be a mainstay in their lives.
“No one asks to be a part of this ‘group.’ We are all chosen, and with that comes a lot of emotions,” Jamie said. “I want to be that person that can help someone in their time of need just as I had for me.”
Related:
Kids at Heart Connects Families Who “Get It”
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