SPRINGFIELD, Mo. — Here’s one for your heart: You probably know by now that February is American Heart Month. This particular week aims to bring awareness to a very special group of heart warriors, those with congenital heart defects.
You might remember 4-year-old Ellie Bowman. We first met her in June of 2017. The sweetest little girl with the biggest smile and love for life. But on the inside, Ellie suffered from a broken heart.
Ellie’s parents came up with the EllieMat invention, to help pay for her hospital bills. But since we first interviewed the Bowmans about that, they haven’t had much time to focus on keeping the business alive. Instead they’ve spent their every moment keeping Ellie’s broken heart beating.
“In April she actually got diagnosed with severe heart failture,” Ellie’s Mom Kali said. “Bi-ventricular heart failure, which means both ventricals were failing. At that time, we had thought that transplant wasn’t an option.”
But the Bowmans would soon learn, Ellie was born to beat the odds. With plenty of reasons to say no, her doctors in St. Louis said yes.
“She’d had three previous heart surgeries, that actually complicates things quite a bit,” Bowman said.
They were willing to try a heart and double lung transplant, so long as Mom and Dad were.
“Then she started to get really sick. July 31 was the day that she was airlifted you know for that last time,” Bowman said. “And we still hadn’t quite made our decision yet about the transplant. So we went up there thinking she wasn’t going to be coming home. I remember holding her on the plane, thinking…. this is it.”
When they got to St. Louis, Kali and her husband Patrick weren’t given much hope if they chose to do the transplant..
“Maybe a 20% chance she would survive the surgery,” she said.
Convinced they had already lost everything, living life as though every breath could be Ellie’s last, the Bowmans decided to go for it. So they were placed on an organ donation list with an average wait time of six to nine months. Ellie didn’t have that long.
“They told us they were going to think about taking her off the list and putting her on comfort care because she was too sick,” Bowman said. “The next day they called and I didn’t even answer my phone.”
Expecting heartache the Bowmans couldn’t bare, thinking Ellie was getting bumped from the list, the Bowmans ignored the calls.
“And then the nurse comes in the room and says, ‘hey – I think you really want to take this phone call,'” Bowman said.
What happens next is something Bowman can only explain as a miracle for her miracle baby.
“We got our organs in four weeks. They told us nine months,” she said. “Part of me was in shock, overjoyed, and part of me was thinking this was the last night I would spend with her.”
After six months spent recovering in St. Louis, the Bowmans are happy to finally be back home in Springfield.
“This is the sound of her old heart….and this is what her new heart sounds like,” Bowman said as she played the recordings.
Bowman is on a mission to raise awareness for congenital heart defects, which she says don’t get nearly the attention they deserve, for the prevalence.
“One in every hundred babies are born with some sort of congential heart defect.,” she asid. “Twenty-five percent of those babies won’t live until their first birthday.”
And though Ellie is alive, active, and more adventurous than ever before, the nearly 20 medications she takes serve as a reminder at 8, 9, noon, 4, and two more times in the evening, that Ellie’s broken heart will never fully heal.
On this Valentine’s Day, you can find Ellie blowing chocolate ice cream kisses, which for the Bowmans, is as sweet as it gets.