Eight-year-old Easton loves to tell jokes, learn new words in Spanish, and play outside. He participates in cub scouts and is partnered with UNCG Spartans Men’s Soccer through Team Impact. His favorite pastimes include swimming, building on Minecraft, and playing with cars and Legos. His favorite subjects in school are Math and PE. Easton sounds like your typical 8-year-old…. Easton is anything but typical.
Easton is a very strong and brave heart warrior. He is also a brain cancer survivor. His roller coaster journey would eventually lead him to Boston, where he would become a trailblazer in the pediatric cardiology world. Boston Children’s Hospital says, “Easton would be the first in the world to have the “reverse” double-switch 1.5 ventricle repair as part of a strategy to surgically rehabilitate the left ventricle in patients with borderline left heart. In fact, he would be the first to ever have the procedure for any heart condition.”
Easton’s medical journey began after falling ill with acute sepsis at 3 days old. He was found to have a congenital heart defect known as Hypoplastic Left Heart Syndrome. The left side of his heart was functioning but underdeveloped. A full biventricular repair was initially considered at Duke. Ultimately, the safer option was undergoing a series of staged surgeries known as the Norwood, the Glenn, and the Fontan. Easton had his first few heart surgeries at Duke before research led his mom and dad to seek a second opinion at Boston Children’s Hospital.
At 19 months old, and with less than three weeks from his first Boston heart surgery, Easton became unresponsive during an afternoon nap. His heart journey was interrupted by a cancerous brain tumor, which was urgently removed that night. Easton recovered beautifully from surgery, but it was soon realized that Easton had lost his ability to walk, talk, and eat. Nobody knew if he would fully recover the milestones that he had worked so hard to accomplish.
Easton continued his cancer journey at Duke, undergoing 33 rounds of radiation treatment over the course of seven weeks. Mom and Easton would stay near the hospital at the Ronald McDonald House during the week while Dad stayed back to care for Easton’s older siblings. The family would spend weekends together until Easton completed his treatment and got to ring the cancer bell!
Easton was back on track and resumed his heart journey. His family took many trips to Boston Children’s Hospital for care over the next few years. Two innovative recruitment surgeries helped strengthen and grow the left side of Easton’s heart with the hope that his heart could eventually handle two ventricles fully pumping. In 2019, Easton’s family was devastated to learn that his left side had not responded well enough. The only alternative at the time was returning to the original plan for a single-ventricle circulation. The family returned to Boston for Easton’s final heart surgery in May of 2020.
It was on a Zoom meeting the day before surgery when everything changed yet again for Easton. His surgical team decided last-minute to offer Easton the opportunity to try something completely different that they had been developing and planning for someone. That someone became Easton on May 20, 2020. The surgery didn’t even have a name yet, so Easton’s dad named it “The Super Easton”. This surgery has given Easton and a small but growing number of other children the chance for better long-term outcomes.
The Schlein family is very thankful for opportunities made possible by Hands for Hearts, and Easton is honored to be the 2024 King of Hearts. Thank you for supporting Hands for Hearts!