Paul Nordmann
Last June, Sarah Christman went in for a routine ultrasound at 20 weeks’ gestation. “It was so typical,” she recalls. Then the ultrasound technician left to get someone else. Then another person. And another.
“Your radar just goes up,” Christman says.
The cause for concern was tetralogy of Fallot, a quartet of congenital heart defects. At the time, she and husband Paul Nordmann knew nothing about the rare condition except that Olympic snowboarder Shaun White and the son of talk show host Jimmy Kimmel were born with it. They consulted with more doctors before meeting Dr. Caroline Lee, a Washington University pediatric cardiologist at St. Louis Children’s Hospital.
“The first time we met her, we totally connected,” recalls Nordmann. They immediately felt a sense of comfort. “There was something very familiar about her,” Christman adds. “It was almost as if she knew us already.”
Lee realized that the couple had already been given a diagnosis, had their questions answered, and read up on the condition. “From the doctors’ perspective, they think, ‘I’ve done my job—I’ve given them the diagnosis and all this great information,’” says Lee, “but to the family, it just leaves them a little bewildered. It’s too overwhelming.”
“There’s just so much that you’re learning,” recalls Christman. “They gave us the same picture of the heart every single time we sat down with them, because you need the repetition and you need to be reminded.”
Over time, Lee has also learned to evaluate the family’s circumstances and focus on the main points. “Confirm there’s an issue,” she says. “‘Your baby will need surgery, but our heart center can take care of it. I’m hopeful that we can have a really good outcome.’” She tries to put parents at ease, but not by “sugarcoating,” says Nordmann. The couple went from “that sinking feeling inside of you,” recalls Christman, “to having somebody who was warm and bringing you in close, saying, ‘This is what we are going to do,’ instead of, ‘Here is what your diagnosis is.’”
Congenital heart defects affect nearly 1 percent of births per year in the U.S., according to the CDC. Locally, the Mighty Oakes Heart Foundation (mightyoakes.org) and Ollie Hinkle Heart Foundation (theohhf.org) provide support to families of children born with such defects.
Christman visited Lee two more times before Jude was born last November. The newborn was soon able to go home, because she didn’t need surgery right away. Several months later, Dr. Pirooz Eghtesady, a Washington University surgeon, repaired the defects of her condition. Afterward, by chance of rotation, Lee was the doctor to read the ultrasound notes, growing emotional as she shared the good news: Eghtesady was able to preserve the valve, and there was minimal leakage, meaning that it was unlikely that Jude would need additional open-heart surgeries. Lee told the couple it was the best tetralogy repair she has ever seen.
“As we understand it, that’s the most we could ask for—the best outcome,” Nordmann says.
Today, despite being born with one kidney, suffering through health complications and numerous hospital visits, Jude often coos, babbles, and smiles, her blue eyes scrunched in pure delight. “This isn’t normal—you know that, right?” other parents will ask Nordmann, who’s found support through the Ollie Hinkle Heart Foundation and the Mighty Oakes Heart Foundation. “She’s got something, and I think it’s because she’s dealt with this heart thing that everything else she has to deal with, it’s nothing to her.”
Lee monitors Jude about every six months—though a chance assignment recently brought them together sooner. When Nordmann, a freelance photographer, was assigned to photograph the physicians in this issue’s “Best Doctors” feature, he was thrilled to see that his baby’s doctor had made the list.
At the photo shoot, Christman surprised Lee with the smiling infant. After being placed in the pediatrician’s arms, Jude laid her head on Lee’s shoulder.
As Christman recalls, it was “almost like a little hug.”
