After more than 300 days at Riley, 11-year-old Edward Sandefur receives his hero heart.
By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org
Megan Hay was changing the dressing on the area around her son’s Berlin heart when her phone rang.
She didn’t stop to answer it, but then a nurse came running in, picked up Hay’s phone, put it on speaker and said, “Say hello!”
It was Riley Children’s Health pediatric heart transplant coordinator Debra Murphy on the line, and that made Hay’s heart skip a beat.
She knew that Murphy would be the one to let her know when a heart had been found for her son, Edward Sandefur.
As Murphy shared the news with Hay that Riley’s heart team had identified a donor heart for Edward, the South Bend mom collapsed on the floor and began to cry.
“So many emotions,” Hay said, thinking back to that day nearly three weeks ago. “It was the best call ever.”
Within hours, 11-year-old Edward would be in the operating room at Riley, where heart surgeon Dr. Mark Turrentine would perform the transplant.
“Before surgery, I had nerves of course, but I actually felt a lot calmer than I thought I was going to that day,” Hay said.
This was what she and her family had been waiting for, preparing for, praying for over the past several months.
Edward had already been at Riley for more than 300 days. In August, he had the lifesaving Berlin heart connected to his body to ease the pressure on his own weak heart.
Hay has not gone home since Edward was admitted to Riley last June. Edward’s dad, Nick, visits on the weekends, along with other family members when they can.
But now, mom and son are adjusting to life after transplant.
“He’s doing really well,” Hay said last week, after Edward was moved out of the cardiovascular intensive care unit to the stepdown unit.
“He is so much happier. It’s been nice to feel like I can see his little personality coming back.”
Seeing the color return to her son’s cheeks and the sparkle back in his eyes is easier on a mama’s heart, too.
“It was so hard just sitting and waiting and not knowing when that call was coming.”
At the same time, she said, she grieves for the family of the child whose heart Edward received.
“I just want that family to know how extremely grateful I am for their selfless gift of this most precious heart.”
Soon, Edward and his mom will move over to the Ronald McDonald House for about a month while Riley cardiologist Dr. Robert Darragh and other clinicians continue to monitor his health. During that time, he will complete cardiac rehab over at the IU Health Methodist Hospital COLTT center.
Then, it’s off to home, where Edward looks forward to being reunited with his two cats, Oreo and Cheeto, his grandmother and the rest of his family.
Hay, who is making a book filled with pictures from Edward’s stay at Riley, has mixed emotions about leaving.
“We made new family here with all of the nurses, so it will be bittersweet saying goodbye.”
The Riley Children’s Health Cardiology and Heart Surgery program is ranked sixth in the nation by U.S. News & World Report.
Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org
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Mom is never far from her son’s side as he waits for a new heart - “We’re all here together fighting and praying for our kids,” says the mother of 10-year-old Edward Sandefur, hospitalized since mid-June.
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