Before Eddie was born, doctors determined he had a heart defect, but the diagnosis wouldn’t come until after he was born on April 6, 2015, at Advocate Children’s Hospital – Oak Lawn.
“When Eddie was just 18 hours old, he had his first procedure, a cardiac catheterization, to get pictures of his heart to see exactly what was wrong,” explained his mom, Jen. “It was then that my husband, Nick, and I learned Eddie had a few different conditions.”
The most serious was major aortopulmonary collateral arteries (MAPCAs), which are abnormal blood vessels that develop in the heart and lungs of individuals with certain congenital heart defects.
In addition, Eddie had pulmonary atresia, a rare congenital heart defect where the pulmonary valve, which controls blood flow from the heart to the lungs, is absent or severely underdeveloped. He also had ventricular septal defect, a hole in the wall that separates the two lower chambers of the heart.
“As a new mom, it was a lot to take in and so overwhelming. Eddie had his first open-heart surgery at two months old. I thought it would fix everything. Little did we know what our journey would become.”
Over the next several years, Eddie would undergo six additional open-heart surgeries, including one in California that lasted 27 hours. Through it all, there were complications, countless scary moments, close calls and always an illness or infection that landed Eddie back in the hospital.
“We always had 100% support from the team at Advocate Children’s Hospital,” shared Jen. “They were so much more than just his care team. We became friends with our doctors and nurses; we went to events with other parents of heart babies and people who work at the hospital. They took such great care of Eddie.”
In March 2023, Eddie was hospitalized at Advocate Children’s with a respiratory virus.
“Kids who have congenital heart defects often also have lung disease. Whenever he was sick with a respiratory infection, it was almost always an automatic hospital stay. This time, his lungs simply couldn’t recover.”
Eddie spent four months in the hospital before passing away on July 6.
“We were and still are absolutely devastated that the boy who made us parents is no longer with us,” shared Jen. “He was the happiest, most wonderful little boy who loved his family and younger siblings.”
During his 8 years, Eddie spent 464 days in a hospital. He had more than 30 procedures, including cardiac catheterizations, G tubes, bedside procedures and open-heart surgeries.
“From birth up until the day Eddie gained his angel wings, Advocate was such an integral part of his life and ours. At the end, when his illness became too much and the staff learned we had made the impossible decision to sign a Do Not Resuscitate order, they came in to say goodbye to him – even if they weren’t working that day. It was a true testament to the people who work at Advocate Children’s.”
Making a difference for other heart families
On the one-year anniversary of Eddie’s passing, Jen and Nick started the Eddie Mayerik Foundation in his honor.
“For everything he went through, he always had a smile on his face,” recalled Jen. “People always called him a light, and we want to continue to be his light.”
The foundation’s goal is to support places like Advocate Children’s Hospital.
“They had such a huge impact on our lives. We want to help other heart families like ours who are displaced for weeks to months on end, families that have to go from two incomes to one so a parent can care for their child – because you can’t send a medically complex child to daycare. It’s even too much for grandparents.”
The Mayerik family chose to support areas of the hospital that were especially meaningful to them, like the pediatric cardiac intensive care unit, the Child Life Program and the Healing Garden.
“We named a bench in the Healing Garden in Eddie’s honor because we loved spending time outside with him while he was in the hospital,” shared Jen. “Even at in the end, the team made it happen despite the huge oxygen tank they had to manage. Eddie still had quality of life, and we’re so grateful we had that space where we could just be together.”
How you can help
Advocate Children’s Hospital is part of Advocate Health, a nonprofit organization that relies on the generosity of donors like you to support programs, services and spaces like the Healing Garden. To help patients like Eddie and their families, please consider making a gift today.