Lee’or and Wendy Rutenberg, of Seattle, Washington, didn’t know what the future would hold when their daughter Sadie was born with a life-threatening heart defect. Now, three years later, the little girl has defied the odds thanks to a newly-approved half-inch heart valve.
“Every single day during that first year of her life, I’d wake up wondering if that’s gonna be the day we found out that she’s not gonna make it. That doesn’t ever end,” Lee’or, 39, tells PEOPLE. “There was no guarantee. No one was telling us she’s gonna be okay. In fact, [doctors] were very real about the fact that she could die.”
Sadie was born with complete atrioventricular canal defect —a large hole in the center of the heart —on Nov. 11, 2014, and underwent a pair of surgeries to repair the defect, Lee’or tells PEOPLE. But when both surgeries were unsuccessful, doctors presented the desperate family with another option.
“Her surgeon came to us with the idea of using this heart valve, but told us that it wasn’t FDA [Food and Drug Administration] approved and we could be a part of the trial to get it approved,” Lee’or says. “She was gonna be the first child in this trial to get it. That was exciting but scary to be a part of a trial that’s such a big deal for saving my daughter’s life. I get shivers just talking about it.”
At just 6 months old, Sadie underwent her third open heart surgery in May 2015, this time to receive the Abbott Masters 15-mm heart valve, the smallest of its kind in the world, according to Seattle Children’s Hospital.
“We were just hoping [the valve] would fit. When Dr. [Jonathan] Chen came out of surgery and said it fit — there’s no putting into words as a parent what that feels like. It chokes me up thinking about that moment,” Lee’or says through tears. “You have all these visions of her in surgery, of [doctors] coming out saying it didn’t work, or she didn’t make it through the surgery.”
“There’s a few moments where you can’t breath because you don’t know what’s coming. Then Dr. Chen tells you everything worked and you just get this huge breath. You start thinking about all the things you thought your daughter would never get to do and realize she’s gonna get to do them. It’s almost too much for words. I can’t tell you how happy that makes me,” Lee’or says.
The little girl was finally able to go home with her parents when she was 8 months old.
Sadie was the first child in that particular trial to receive the valve. Nearly three years later, the valve is officially FDA approved. The administration approved the valve for babies in March, according to the hospital.
From left: Wendy, Lee’or and daughter Sadie Rutenberg
Now, Lee’or credits the valve for saving Sadie’s life, noting that the toddler underwent a total of five open-heart surgeries and also has a pacemaker.
“If you looked at Sadie you wouldn’t believe she’s been through what she’s been through. You look at her and you’d have no idea. She’s this vibrant, playful, energetic little girl. She has more energy than I do,” Lee’or says.
“She keeps us on our toes. She always wants to do things like go to the playground or to the zoo — she loves going to the zoo! She can’t get enough of life. She’s never shown any signs or ill effects from this. She’s just the cutest and the happiest.