March 5, 2013 at 9:05 AM ET
A Texas woman received tragic news 16 weeks into her pregnancy: An ultrasound showed that her fetus was developing with a rare heart malformation that almost always proves fatal.
"I was devastated,” Ashley Cardenas told TODAY’s Janet Shamlian. “I didn’t really understand what they meant by her heart was on the outside of her body.”
Rather than terminate her pregnancy, Cardenas opted for a risky operation once she gave birth. Her daughter, Audrina, was born in October with ectopia cordis, a condition in which all or part of the heart is outside of the chest.
On Audrina’s second day of life, a team of 11 doctors at Texas Children’s Hospital in Houston spent six hours performing a life-saving, open-heart surgery to make room in her chest for the one-third of her heart that was outside of her body.
“The actual chest cavity doesn’t form in its proper dimension, so you can’t just put the heart back in there and close the door,” said Dr. Charles Fraser, a heart surgeon at Texas Children’s.
Audrina beat long odds; her surgery was a success. After weeks in the hospital, Cardenas was finally able to hold her daughter.
“It’s amazing,” said Cardenas, who also has 6-year-old twins. “I don’t even want to put her down. She looked like a normal baby.”
Now 4 months old, Audrina is filling her mother with joy.
“She’s just wonderful,” Cardenas says. “Just a wonderful little baby.”
Audrina is fragile, though. She was discharged from the hospital on Jan. 23 with a pink external shield over her heart, which sits just below the skin and is still vulnerable.
She is also on oxygen and a feeding tube, and requires around-the-clock care. Eventually, doctors will implant a permanent cover in her chest. But by the time Audrina is in school, she should be just like her friends.
Audrina’s condition is so unusual that it afflicts just eight out of 1 million babies. Of those, 90 percent are stillborn or die within the first three days of life, the hospital has said.
“It’s extremely rare,” Fraser said. “Most of those children just don’t live.”
For now, Cardenas is embracing all of Audrina’s milestones, like that first smile.
“She’s really the best baby anybody could ask for,” she said. “She’s really smiley at all times, so I think she’s going to enjoy life to the fullest.”