Sara: How a New Law Helped Doctors Catch Her Heart Defect

“Sara had an interrupted aortic arch type-B with a VSD and a hypoplastic aortic valve.” Nonnie Hunziker, Sara’s mom, effortlessly rattles off the scientific terms while pinching a speck of fuzz off the plump 5-month-old’s face.

Nonnie delivered Sara after a “perfectly normal” pregnancy, near her home in northeastern Colorado. Sara seemed in excellent health until 24 hours old, when standard pulse oximetry screening returned some worrisome results.

The importance of early detection

“We’ve found that if you measure the oxygen levels of babies about 24 hours after they’re born, it picks up kids who might have congenital heart disease,” says Children’s Hospital Colorado’s Christopher Rausch, MD. “If they go home not knowing they have a heart problem, they can get very sick, very quickly.”

Studies had shown the efficacy of pulse-ox screening as early as 2007, but the thinner air of high elevation affects blood oxygen, and Dr. Rausch’s team wondered if the test would work as well at Children’s Colorado, a mile above sea level.

Finding results at higher altitude

“We did a study at University of Colorado Hospital and at Memorial Hospital in Colorado Springs, which sits at about 6,500 feet, and proved that, yes, it could work,” says Dr. Rausch. “Once we proved that, we partnered with the American Heart Association to pass legislation saying that every baby born in Colorado below 7,000 feet should get a pulse-ox test.” The law passed in May 2015.

How the pulse-ox test saved Sara’s life

So when Sara was born in July, she received the test as a matter of course. “She failed,” says Nonnie. “She failed again at 25 and 26 hours, so they took an echocardiogram and sent it to Children’s Colorado. They sent an ambulance right away. There were like eight doctors waiting for us.”

“I still didn’t really understand what was going on,” recalls Adam Hunziker, Sara’s dad. “Nonnie was exhausted, she fell asleep. Then the doctor comes in and says, ‘As soon as your wife is awake, I’ll explain.’ I’m just sitting there hoping she’s going to wake up soon.”

Sara was born with her left ventricular outflow tract obstructed, preventing her heart from pumping oxygenated blood to the rest of her body, as well as an obstruction of the main artery coming out of her heart. James Jaggers, MD, performed the operation — known as the “Yasui” procedure — necessary to restore blood flow through Sara’s heart to her body.

From surviving to thriving

The operation was a success and Sara is doing well. She can roll over and Nonnie thinks she’ll be sitting up soon. Her 2-year-old brother Levi is teaching her how to high-five and play tag. (“He’s not very good at it,” Nonnie quips. “He just tags her and runs away.”)

And while any heart operation on an infant requires quite a bit of follow-up care, Sara’s last check-up at Children’s Colorado went well — it’ll be another month before she has to go back. In the meantime, Nonnie’s confident she can handle what comes next. “We’ve learned more about the heart than we ever wanted to know,” she says.