“What do you mean her heart is outside her body?”
It’s not a question anyone ever expects to ask, but Brian Veitz found those words streaming out of his mouth on a fateful day in late 2014.
Up to that point, wife Caitlin’s pregnancy couldn’t have been smoother. In just a few short months, she and Brian would welcome baby Kieran into the world they shared together in Bismarck, North Dakota, where she worked as a substitute teacher and he as a petroleum engineer.
As Kieran grew up, maybe she’d help mom and dad tackle DIY home-improvement projects, their favorite way to spend their downtime. The Veitz family’s future looked full.
But then came the 20-week ultrasound, when doctors spotted the malformation, known as ectopia cordis.
Caitlin and Brian were stunned, and the docs stymied. They had never seen a case like this before, so they referred the parents-to-be to a maternal-fetal medicine specialist in Fargo.
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The diagnosis: an incredibly rare congenital condition called Pentalogy of Cantrell, which effects just 1 in 5.5 million births. The mortality rate is 95 percent.
Caitlin and Brian quickly learned of their options. They could either terminate the pregnancy, stat—North Dakota facilities won’t do it after 24 weeks—or seek further care at the Mayo Clinic in Rochester, Minnesota, 12 hours away from their home.
“Even though the Mayo Clinic had only seen a few cases like Kieran’s and none of the babies had made it to birth, we needed to try,” Brian says. “In her ultrasound photos, she was sucking her thumb, playing with her toes, and hugging her heart like a little pillow.”
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The Veitzs also felt comfortable forging ahead knowing they had some of the most dedicated doctors on the planet in their corner. “One of the things I love about our team is that they told us they’d be using cutting-edge techniques for Kieran’s operation,” Brian says. “They didn’t have a lot of experience with this kind of case, but they promised us they were going to try as hard as they could.”
In March 2015, at 36 weeks, Kieran decided it was show time. Caitlin was already at the Mayo Clinic while Brian was home in North Dakota; his plan was to drive back the following week, but life doesn’t have much use for plans.
He hopped on the first flight to Minneapolis, but by the time he landed, Caitlin had already given birth. Before she could even look at her daughter for a few seconds, Kieran was whisked away to the operating room.
Sixty doctors and nurses were on hand for Kieran’s birth and subsequent procedure, which called for surgeons to essentially push her heart back into her body and close up the skin. By then, Brian had made it to the hospital and was anxiously waiting. “I was extremely nervous, to say the least, but I completely trusted our team,” he says.
After 5.5 hours, the wait was over: Kieran aced her surgery and her first day alive. From then on, every moment was a milestone. “She made it two days, and then three days, and then a week, and then a month,” says Caitlin. “It was crazy. It was amazing.”
The family’s faith paid off. Today, Kieran is almost four years old. She’s a perfectly happy and increasingly healthy toddler hell-bent on crushing every obstacle in her way.
“She wakes up every day and she’s just ready to go,” Caitlin says. “With everything she’s gone through, nothing fazes her at all.”
How have Brian and Caitlin soldiered on since first learning of their daughter’s uncertain future four years ago? By continuing to believe and trusting others, especially when the outlook seems most bleak.
“For any parents who receive a scary diagnosis for their kids, don’t give up hope, even if you can’t find any positive articles out there,” Brian urges. “It doesn’t mean there isn’t hope.”
Caitlin echoes that sentiment, pointing to the amazing doctors who kept her daughter alive. “Remember, somebody out there will try,” she says. “That’s how we get better at medicine. Somebody is always willing to try.”
Kieran has been tube-fed since birth and has been using Kate Farms since summer 2018. We are so proud to be a small part of her incredible story.