INDIANAPOLIS — An Indianapolis doctor was the first to use a Berlin heart in the state and he's credited with helping pave the way for the small life-saving machine's use across the country.
"It's an interesting history between Indianapolis and the Berlin Heart,” Riley Doctor Mark Turrentine said.
It started back in 2003, one of Turrentine's pediatric patients was in heart failure and he needed to find a device small enough to help. While researching his options, he recalled learning about the Berlin heart, which had only been used in the United States maybe one time previously.
So he started the process, eventually getting approval from the FDA and was able to implant the very first Berlin Heart in the state of Indiana in his patient.
“There really isn't a long-term durable device available like the Berlin available to children after all these years, trials and ideas, constructs and porotypes and so forth. This is still the one that gives us a chance to help children with end stage heart disease,” Turrentine said.
It wasn't even a year after that successful surgery that Turrentine said he had to apply for approval for a second patient to use the Berlin heart.
After his first two successful surgeries, the FDA began recognizing the Berlin Heart so that it could be used more regularly across the country. .
10-year-old Edward Sandefur has been waiting six months for a new heart.
He's been at Riley hospital for the past eight months and relies on the Berlin Heart to keep him alive while he waits.
But Edward’s journey for a new heart started several years earlier.
He was 6 years old when a doctor heard a murmur that led to the detection of his heart defect during a routine check-up.
By April of 2021, Edward had his first open heart surgery.
Barely six months later he had his second and by April 0f 2022 doctors had placed a pacemaker to help keep his heart working.
Then in June of 2022, Edward got sick. His mother took him to the ER in South Bend where he had to be intubated.
"Once we got to the ER things just happened so fast,” Hay said. “They had to intubate him and transfer him down here. I didn't think it was a bad as it was.
At first, Edward seemed to recover quickly. But as things progressed Hay said there were a few nights she didn’t know if she would be bringing her son home.
“I thought we would be home within a few days or maybe a week. The first night he was here we was up and talking around his breathing tube.”
Hay credits the support of her family and the hospital staff with keeping their spirits up as they wait for Edward's new heart.
While he waits, Edward's Berlin Heart has to stay plugged in, so he lives at the hospital while waiting for his transplant. It can only be unplugged for around 30 minutes at a time.
Because of that, Edward's mom has tried to make his hospital room feel more like home with Super Mario bedsheets, Legos and of course, video games.
“We just try to go day by day and keep things as normal as possible," Megan Hay, Edward's mom said.
Edward has also lovingly named his Berlin Heart, Bernie.
The three, Bernie, Edward, and Hay are inseparable.
"He's my heart walking around out here," Hay said. "He's my whole world."
Hay has been at Riley since the day Edward was admitted. She sleeps right at his bedside in a chair and has for 244 nights and counting.
She says the machine keeping her son alive holds a special place in her heart as well.
"Bernie here is what we have. I am happy he is working and getting us to where Edward need to get. He takes up a lot of space and can only be unplugged for 20-25 minutes at a time," Hay said. "I love the machine."
Hay said it's hard being at Riley and seeing her son go through something this big.
"It's emotionally draining," she said. "Unless someone's been through it they just have no idea."