Health & Wellness

Baby born with ectopia cordis is doing well at 20 months old

In November 2014, Caitlin and Brian Veitz went to their OB-GYN in Bismarck, North Dakota, for what they thought would be a routine, 20-week check up. They left the appointment absolutely terrified.

Their doctor diagnosed their daughter Kieran with ectopia cordis, a rare condition where the heart is outside of the baby's chest. In Kieran's case, her liver was outside of her body as well. This frightening condition occurs in just 1 in 100,000 births and can result in death or termination of the pregnancy.

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Baby born with her heart outside of body is almost 2 years old

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Baby born with her heart outside of body is almost 2 years old

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According to the American Heart Association, there are at least 18 distinct types of congenital heart defects and they affect nearly 1 percent (or 40,000) of births in the U.S. each year. As treatments continue to advance, these conditions are not as dire as once thought to be, though they are the leading cause of birth defect-associated infant illness and death.

"We kind of thought it was over before we could even begin," recounted Caitlin Veitz, 27. "We were certain something like this would be fatal quickly, even if it hadn't proven to be just yet."

Caitlin Veitz
Kieran charms Dr. Joseph Dearani at Mayo Clinic.

So the couple moved quickly. They initially met with doctors at the Maternal Fetal Medicine Clinic in Fargo. There, experts helped to rule out other genetic anomalies, like Down syndrome, and came to the conclusion that if Kieran could survive the ectopia cordis surgery, she would likely fare well because her other inter-cardiac defects were mild.

RELATED: Baby born with heart outside her chest is beating odds

"I felt very confident at that point," remembered Veitz. "It was really my 'coming to' moment with everything... I wanted to go forward and help her as long as she wanted to fight."

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Baby born 'twice' celebrates 4-month birthday

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Baby born 'twice' celebrates 4-month birthday

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Their doctors in Fargo referred the couple to Dr. Joseph Dearani at Mayo Clinic in Rochester, Minnesota. Three weeks later, they went there to meet him.

"No one has a lot of experience (with ectopia cordis) — a pediatric surgeon may see this once in their career," said Dearani. "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."

Dearani advised the couple not to give up.

RELATED: Boy born with part of brain missing turns 2

"We wanted to give this kid a shot, and we had a chance of giving the family and the child a realistic hope," Dearani said.

Thanks to 3-D imaging, the large team of doctors and specialists had a vivid understanding of Kieran's anatomy in advance, which meant they could plan the surgery very well.

Caitlin Veitz
The adorable toddler celebrates one year since returning to her home in North Dakota.

Veitz was scheduled for a cesarean section for week 37, but at her 36-week appointment, doctors became concerned with Kieran's vitals and decided to schedule the surgery that day.

"Over 60 doctors and nurses from 12 different specialty teams (from obstetrics, anesthesia, cardiology, neonatal and more) came together in an hour and a half to get Kieran into the world as smoothly as possible," Veitz recounted.

In five hours, the team was able to place Kieran's heart back inside her body and move her to the cardiac intensive care unit. Dearani stressed that Mayo's interdisciplinary approach to medicine is a big part of why this surgery was such a success.

RELATED: Babies in tiny red caps help raise awareness for heart disease in February

"I was optimistic and confident, but I was anxious," said Dearani. "I'm very lucky to be surrounded by hall-of-fame practitioners, to my left and right."

Caitlin Veitz
Don't let the wires scare you, Kieran is doing amazingly well at 20 months old.

Kieran remained in the pediatric ICU for nearly three months before returning home. Her mother says the girl's recovery has been "expedient," and she can now breathe without a ventilator during the day, and only needs it at night.

Today Kieran is 20 months old and is doing very well. She has a congenital heart anomaly that will need to be operated on, but doctors are optimistic about the procedure now that she's almost 2 years old.

"It's very surreal," said Caitlin Veitz. "We started out saying we would be here for her as long she felt like fighting. 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," Veitz continued. "She's going to grow up. She's going to do everything anyone else gets to do."

For more information on Kieran's progress, please visit the family's GoFundMe page. For more information on how you can help children with congenital heart defects, please visit The Children's Heart Foundation.

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