Many of us assume heart disease is a problem for adults. But Charlie Rolling is only eight-weeks old.
She's spent her brief life in a small hospital crib at Children's Healthcare of Atlanta at Egleston, her parents
Seth and Kinsey Rolling keeping watch. Lately, what they're seeing looks promising. Kinsey says, "She has quite the personality. She'll let you know when you're doing something wrong. And she likes to laugh and smile."
That feels like such a gift - after eight weeks - and three surgeries. Children's registered nurse Caitlyn Klobe, who took care of Charlie when she came out of the neonatal intensive care unit, says, "She looks amazing. I just saw here for the first time in a week, and she's so much bigger and interacting and smiling and laughing."
The Rollings, who are from Columbus, first got the news something was wrong when Kinsey was 12 weeks pregnant. Two weeks later, they came to Atlanta to see a specialist.. Kinsey says, "After doing an ultrasound they said, 'She doesn't have a genetic defect. It's more like her organs didn't go in the right placement. And her heart doesn't look like it's functioning correctly.'"
For months, all they could do was wait. Kinsey says, "It was a lot of anxiety because there were a lot of unknowns. Because we would ask at each appointment, 'What should we expect when she's born?' And no one could give us an answer."
Finally, July 20th, 2014, Charlie was born, by c-section, at Northside Hospital in Atlanta. Her father Seth says, "It was chaos. There were, I guess 20, plus people in the delivery room. They were prepared for whatever."
"Whatever" turned out to be really complicated. Charlie had multiple heart defects, including a condition called heterotaxy. Klobe says, "Things that are on the right side should be on the left side and things that are on the left side should be on the right side. So she's kind of flipped around, so that causes problems all in itself."
One side of Charlie's heart couldn't communicate with the other, throwing her heart rhythm off, landing her in the NICU. She needed a pacemaker. So, at three weeks of age, she had her first surgery, then another, then another. She also has a rare liver disease known as biliary atresia, which can cause liver failure.
The back-to-back surgeries were tough. Seth Rolling says, "For me it was my worst nightmare." Kinsey says, "She was on a ventilator for about 5 weeks. So, we didn't get to hear her cry or smile or laugh or interact, or really look into her eyes."
So, seeing Charlie today looking - and acting - like a typical newborn feels like a gift. And doctors have started talking about the "h" word: home. Kinsey Rolling says, "We haven't been home for 8 weeks. And just to sleep in the same baed and have our kids and out dogs in the same spot will be rewarding."
Charlie will need more surgeries down the road, and her parents are nervous about taking care of her by themselves once they leave her. But it's time. Kinsey says. "It will be challenging but I'm up for the challenge."