Jacksonville girl fights rare, complex heart defect

By Adrienne Moore, Weekend anchor, reporter, amoore@wjxt.com
Published On: Jan 20 2014 10:07:51 PM EST
Updated On: Jan 21 2014 07:23:15 AM EST

Callie Carver has been in and out of the hospital since she was just 3 months old, fighting a rare heart defect. In a few days, she’ll be faced with another surgery that is hoped to help the 6-year-old’s blood flow better through her heart. 

JACKSONVILLE, Fla. -

Callie Carver has been in and out of the hospital since she was just 3 months old, fighting a rare heart defect. In a few days, she’ll be faced with another surgery that is hoped to help the 6-year-old’s blood flow better through her heart. 

Carver has congenital heart disease and has undergone countless surgeries and more than two dozen blood transfusions. While her battle is far from over, her parents are struggling to make sure she gets the proper care she needs to survive. 

"We do a lot of praying and we're a firm believer that God has brought her through all of this, and you know, using her to show people to have faith and look how far He's brought her,” said Callie’s mother, Sarah Carver.

So far, Callie has had eight surgeries to help her condition and this week, she’s go in for her ninth open heart surgery. 

“It’s been tough," said Sarah. "She’s been through the wringer, but she does really well. Kids usually are really resilient, but you know, it’s hard. Most kids with her defect don’t really survive, and most certainly 10 years ago, she wouldn’t have survived.”

Callie was born with a rare and complex heart defect called pulmonary atresia, with an intact ventricular septum. Two years ago Callie’s aorta ruptured and she was rushed into surgery. 

“They keep telling you that she could have brain damage, she might have this. You know, you just have to remain strong and remain in your faith that everything is going to be okay,” said Sarah.

Sarah said while her daughter may be small in stature, Callie, affectionately called 'Bean,' makes up for her size in her strength. 

“She’s a little fighter and she’ll tell you like it is," Sarah said. "She’ll tell the doctors, ‘I don’t want that.’ She’ll stand up for herself. And definitely, I don’t think she’d be as far as she is without her little attitude." 

Sarah said that her daughter’s can-do attitude has been what keeps her entire family going as they manage a mountain of medical bills. 

The Carvers told Channel 4 that everything from medical expenses, to food, traveling and lodging has taken a toll on their family and prompted them to start a website asking for help. 

"We've spent a week in a hotel and we've spent almost $100,000 for the hotel because the cheapest hotel we can get, it is $100 a night. So it's very expensive -- on top of our rental car, and our food and everything else you have to deal with,” said Sarah.

With Callie’s ninth surgery set for Wednesday, to repair an artery that will increase blood flow, there is no doubt that Callie has the heart of a champion. 

“She's a terminally ill child and her heart will never be 100 percent," Sarah said. "She'll always be battling this and unfortunately, surgeries are her only hope for survival.”

There's no word yet on when Callie will be able to return home to Jacksonville. Her mom said they will have to be in California until they get the “all-clear” from doctors to come home. 

Learn more about Callie's battle and how you can help | Raise funds for the Carver family

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