Baby Born With Heart Outside Her Body Now 18 Months Old, Doing Well

By In the Loop • October 27, 2016

Kieran Veitz was born with ectopia cordis, a rare congenital heart defect that caused her heart to grow outside of her body. Today, 18 months later, Kieran is on her way to catching up with kids her own age thanks to her surgical care team at Mayo Clinic.

Eighteen months ago, Caitlin and Brian Veitz went to the doctor for a routine 20-week ultrasound that would end up changing their lives, and the life of their daughter, Kieran. "He showed us the silhouette of the lungs, and where the heart would normally sit," Caitlin tells Barcroft Media. "And then he pointed three inches to the left, and showed us where her heart had grown." Caitlin began to grasp what she was seeing. "That's when I said it out loud: Her heart had grown outside of her chest," she says.

Kieran was diagnosed with ectopia cordis, "a rare congenital heart defect that affects one in 100,000 babies," Inside Edition reports. Caitlin and Brian were told that even if Kieran survived birth, there was a "95 percent chance" that she wouldn't live more than a week outside the womb. "We knew the odds were stacked against her," Caitlin tells reporter Johanna Li.

"To give their baby the best chance" for survival, Li reports, Caitlin and Brian moved their prenatal care to Mayo Clinic's Rochester campus. There, a team led by Jane Matsumoto. M.D., co-director of Mayo Clinic's 3-D Anatomic Modeling Lab, built a detailed, life-size 3-D model of Kieran and her heart. The model would be used to help pediatric cardiac surgeons Joseph Dearani, M.D., and Christopher Moir, M.D., as well as Caitlin's obstetrician, Carl Rose, M.D., prepare to move Kieran's heart inside her body. It was a delicate, complex and carefully planned procedure they hoped would save Kieran's life.

Caitlin's doctors scheduled a caesarian delivery for the 37th week of her pregnancy. That plan quickly changed when Caitlin's blood pressure suddenly spiked, causing Kieran's vital signs to weaken — and causing Drs. Dearani and Moir to put their surgical plan into immediate action. "They pulled everyone together, about 60 doctors and nurses from 12 different teams, in an hour and a half," Caitlin says in a Mayo Clinic News Network story about Kieran's birth.

Doctors used a specialized C-section technique that kept Kieran connected to Caitlin via the umbilical cord. This gave them the time they needed to stabilize Kieran's heart. Drs. Dearani, Moir and others then spent the next five hours "meticulously" placing Kieran's heart back inside her body.

As Li reports, little Kieran "miraculously" survived that procedure and today, at 18 months old, is doing well. And although she continues to work with a specialist "to catch up with other children her age, including eating with her mouth, walking and even talking," Kieran's doctors say they remain "very optimistic" about her future.

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