On August 15, 1994, Ryan Heller was born in Rockford, Illinois. About 12 hours after birth, Ryan was diagnosed with a complex heart condition after doctors noticed that he would sometimes stop breathing and turn blue. Ryan was able to go home, but ended up back at the Rockford hospital a few weeks later and was airlifted to a children’s hospital in Chicago for treatment.
Multiple open heart surgeries were inevitable for Ryan due to the complexity of his heart defects. His first few corrective heart surgeries were completed in Chicago, and then at age 5, the Hellers transitioned Ryan’s care to the Mayo Clinic in Rochester, Minnesota. While at the Mayo Clinic, Ryan underwent more heart surgeries and around age 10, one of Ryan’s surgeons had to have a very difficult conversation with Ryan’s parents, Jannel and William. Jannel remembered that conversation with the surgeon and said, “He said he wouldn’t open him back up. It was too risky.”
Ryan had developed protein losing enteropathy (PLE) due to one of his heart surgeries, the Fontan operation. This meant that the only option he now had was a heart transplant. That news was hard to hear but Ryan’s parents accepted it and Ryan was listed for transplant.
From age 13 to 22, Ryan waited for his new heart. His physicians at Mayo Clinic did not feel comfortable performing Ryan’s transplant because of the risk, so Ryan’s cardiologist sent Ryan’s information to other hospitals.
Fortunately, Ryan’s information crossed the desk of Dr. Charles Canter and Dr. Chesney Castleberry, specialists in Pediatric Heart Failure and Transplant at the St. Louis Children’s and Washington University Heart Center. Dr. Canter remembered Ryan’s case from years back and was confident that the team from the Heart Center would be able to take it on. He told Jannel, “Trust us. We do tough kids like Ryan all the time.”
Ryan, now 22 years old, had a hard decision to make.
Drs. Canter and Castleberry evaluated Ryan for a week in early April 2017 and admitted him weeks later on April 26. While they waited on a new heart, the Hellers met Ryan’s newest heart surgeon, Dr. Pirooz Eghtesady. Jannel remembered that he was, “Calm, confident and honest. He didn’t sugarcoat anything. He told Ryan, ‘I will get you through the operation- I can promise you that,’ and I believed him.” Ryan did too.
Jannel describes the moments leading up to the transplant saying it was “Far more difficult than we were prepared for. Nothing else seems of any importance other than your child's survival and recovery. We prayed HARD. We knew Ryan was capable of pulling through as we had seen it so many times before. He is the bravest person I know.”
Ryan’s new heart became available May 18 and he was quickly prepped for surgery. Ryan looked at Dr. Eghtesady and asked, “You got this?” Dr. Eghtesady smiled and replied, “I got this.” This would be Ryan’s 9th time having open heart surgery.
The Hellers waited patiently during the 15-hour transplant, getting updates through the EASE app, which relieved much of their stress. When the operation was completed the following day, Dr. Eghtesady walked into the waiting room with a smile on his face. Ryan’s transplant was a success. He was discharged from the hospital July 5th and returned home to Rockford on July 17.
Jannel tried to find the words to describe her family’s experience at the Heart Center and said, “Dr. Eghtesady has a gift, truly. The children he helps are so very fortunate. To everyone, I would say thank you for accepting the challenge, for tolerating me as a mom. Thank you for your patience and your knowledge. I’m very grateful he’s home and has a shot at a normal life.
As with every major operation, Ryan has good and bad days but he’s doing very well. He said, “I feel like a different person.” A self-taught chef, Ryan hopes to pursue a career in culinary arts as he loves to feed people. His health is good and he’s taking it slow; one day at a time.
