Ninety percent of babies born with ectopia cordis die within days or are stillborn, but Kieran Veitz is now almost 2!

baby kieran jane
Credit: GoFundMe

When Caitlin and Brian Veitz's expectant baby was diagnosed with ectopia cordis—a rare condition where the heart is outside of the baby's chest—during a routine 20-week ob-gyn visit, the couple thought their journey as parents was over before it had even started.

"We were certain something like this would be fatal quickly," Caitlin recalled to Today.

Caitlin was right to be concerned. Ninety percent of babies born with ectopia cordis die within days or are stillborn. But doctors at the Mayo Clinic in Rochester, Minnesota were cautiously hopeful that if the baby—a girl!—could survive surgery to correct the condition, she may just be OK.

"We didn't have specific experience with this diagnosis, but had a fair amount of experience with conjoined twins, where sometimes you end up with a heart that is not completely in the chest cavity," explained Dr. Joseph Dearani. "We wanted to give this kid a shot."

According to Today, it took more than 60 doctors and nurses from 12 different specialty teams an hour and a half to deliver the Veitz's daughter—who they named Kieran—then another five hours to place her heart back inside her body.

"I was optimistic and confident, but I was anxious," Dr. Dearani recalled.

kieran after surgery
Credit: GoFundMe

That was 20 months ago. And while Kieran remained in the pediatric ICU for nearly three months before finally going home, she is now almost 2 years old and continuing to defy the odds.

"We started out saying we would be here for her as long she felt like fighting," Caitlin explained. "Then she made it to birth, one day, two days, three days, a week, a month, six months, a year, and now 20 months old, about to turn 2. She's essentially re-writing what most know about the condition."

kieran on her first birthday
Credit: GoFundMe

What a precious little miracle! To keep up with Kieran's amazing progress or to help support the family, visit their GoFundMe page.

Hollee Actman Becker is a freelance writer, blogger, and a mom. Check out her websiteholleeactmanbecker.comfor more, and then follow her on Twitter at@holleewoodworld