For many people, the holidays are a magical time. But for those who have lost a loved one, especially a child, this time of year often feels quite different. "The holidays are hard," Ashley Scheffert tells us. She speaks from experience. Ashley's oldest son, Ethan, passed away in January 2015. He was just 14 months old and had spent most of his short life — including almost every holiday — in hospitals.
"The only holiday he celebrated at home was his first birthday," Ashley tells us. Shortly afterward, Ethan's doctors in the Twin Cities told Ashley and her husband, Jeremy, that their son, who had been born with hypertrophic cardiomyopathy, would need a heart transplant. They referred the family to Mayo Clinic, where cardiovascular surgeon Joseph Dearani, M.D., replaced Ethan's heart with a donor's. Though the Schefferts hoped the surgery would be a new beginning, it instead marked the beginning of the end of Ethan's life.
"He went into cardiac arrest 12 hours after surgery," Ashley says. As critical care doctors rushed into Ethan's room, another doctor — Ethan's pediatric cardiologist, Jonathan Johnson, M.D. — suddenly appeared. It was late in the evening, and Ashley was surprised to see Dr. Johnson at the hospital. "He told us he'd been monitoring Ethan from home and came in as soon as he saw what was going on," Ashley says. Dr. Johnson helped explain to the family what was happening in Ethan's hospital room. But he did much more as well. "He never left our sides that night," Ashley says. Dr. Johnson sat on the floor in the hallway next to Jeremy, comforting the distraught father. He hugged Ethan's grandfather and brought bottles of water to the family. "Dr. Johnson did whatever he could to help us," Ashley says. "He had to work the next day, but he didn't leave until 4 a.m. The support he gave us was amazing."
The support of Dr. Johnson, Dr. Dearani and the other members of Ethan's care team would continue for the next 49 days, until Ethan passed away from complications following his transplant. "It wasn't the outcome we expected or wanted," Ashley says. "But we had an amazing experience at Mayo. If, God forbid, we ever faced something like this again, we would be right back at Mayo."
For now, the Schefferts return to Mayo each Christmas, accompanied by a dozen or so family members and friends. The group calls itself "Ethan's Angels," and delivers truckloads of toys and hundreds of gift cards they've collected in Ethan's honor. "It keeps his memory alive," Ashley says of the annual toy drive, her voice catching. "The toy drive helps us. It's a big deal for our family."
It's a big deal for the families on the receiving end as well. "It's an amazing, beautiful gift," says Val Stuve, a child life specialist at Mayo. Stuve and her colleagues set up tables to display the toys that Ethan's Angels deliver. Then families whose children are hospitalized come and choose gifts for their kids. Ashley and Jeremy also take carts of toys to the rooms of children whose families can't step away from their bedsides. Including many families on Mary Brigh 5B, the floor where Ethan received care. "That's where our hearts are," Ashley says. "We love going back there. It makes us feel good to be able to touch these families' lives at a hard time."
Ethan's Angels will be delivering toys to the Saint Marys campus of Mayo Clinic Hospital — Rochester on Saturday, Dec. 21. If you'd like to contribute, please do so before 8 a.m. that day. You can drop gifts at the admissions desk or contact Child Life at email@example.com to make donation arrangements. You can also learn more at Remembering Ethan. Then don't forget to leave a comment below before using the handy social media tools to share this story with others.