HEARTBREAKING UPDATE: Rare heart condition claims baby girl who fought it her entire 3 weeks of life
ATLANTA - A Georgia family is desperate for answers after their daughter was born with an incredibly rare heart defect.
Gracelyn is just three weeks old, but her family says she has perplexed the surgeons who are doing everything they can to help her.
Her parents have spent every day at the hospital since she was born, and they know she could be there for at least a year as doctors try and figure out how to fix her little heart. They knew she would need surgery before she was born, but could have never imagined how serious her condition would be.
"She's beautiful, she's great, she's a blessing, honestly," said Gracelyn's mom, Jamie Vitale.
PHOTOS: Gracelyn
She is already so proud of her daughter and all she's endured.
"She was in heart surgery for 21 hours, open-heart surgery, they described her heart as swiss cheese," she said.
Gracelyn was born with a rare form of congenital heart disease and her family says doctors told them there is an uncountable number of holes in her heart.
They say surgeons told them they have never seen anyone like her.
"It was overwhelming. As a grandmother and a mother, your natural instinct is to fix and nurture and take care of, you feel helpless," said Linda Rubino.
Doctors put Gracelyn on a lifesaving machine that acts as her heart and lungs. Most patients are on it for three or four days as their hearts recover. Gracelyn has been on it for 14 days while doctors do everything they can to help.
"Everybody here at the hospital has been amazing, and I know and the family knows that they've done everything they can to go above and beyond," said Rubino.
If Doctors in Atlanta can't save Gracelyn, her family hopes a cardiologist - or somewhere - will see her diagnosis and know what to do to help.
They hope she beats the odds.
"We are hoping she's the one in the medical lectures in the future next to the professors, and they can tell the story of how everyone was scratching their heads, and they'll introduce Gracelyn Webb," said Rubino.
Until then, her parents will be by her side, hoping for a miracle.
"We'll get through this. We will make it through this. I am positive we will. I won't ever give up on her," said Vitale.
The family has also established a website to follow Gracelyn's care.
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