Eloise Hoffman was born with truncus arteriosus, a rare heart condition
An Illinois toddler is ready for winter weather after undergoing open-heart surgery as a baby for a rare heart condition.
Eloise Hoffman, who turns 2 next month, was born with truncus arteriosus, a heart condition where just one blood vessel leads out of the heart instead of the usual two. The life-threatening issue meant that oxygen-rich blood was mixing with oxygen-poor blood, requiring immediate treatment.
Eloise’s parents, Krista and Matt Hoffman, both 38, learned of her condition just a few days after she was born after a regular checkup. Their pediatrician told them that Eloise had a heart murmur, which is not uncommon for newborns and typically clears up in a couple days. But hers persisted, and the Hoffmans rushed her to Dr. Michael Perez, a pediatric cardiologist at Northwestern Medicine Central DuPage Hospital.
“He told us that she had this heart defect, and we were just in shock,” Krista tells PEOPLE. “It was really scary.”
“It sort of felt like it was out of a movie, because he told us and then a few minutes later we were ushered into another room because we would have to go up to Lurie Children’s Hospital via either a helicopter or ambulance,” Matt says. “It all just took off from there within five minutes of learning what was happening.”
Eloise immediately needed to go to the hospital by ambulance so she could be hooked up to oxygen and medication before eventually undergoing open-heart surgery.
“With truncus you need surgery within the first few weeks of life, or else they start to go into heart failure,” Krista explains.
The Hoffmans, who also have two sons aged 4 and 5, had to wait about a week for the surgery, and they say that those days were far more fraught than the four to five hours when Eloise was actually under the knife.
“The least stressful part of the whole thing was when she was in surgery, because we knew that she was in good hands,” Matt says. “The waiting for the surgery — you’re in a room and she’s hooked up to 15 different machines and they’re all beeping and there’s sick kids all around you. That actually seems to be the most stressful part. And as you wait she deteriorates a little more every day. She needs more oxygen and she needs more medicine every day until she gets the surgery.”
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Krista agrees, adding, “She wasn’t going to survive without the surgery. So we knew that once she got the surgery she would have a healthy heart, and we were excited to get her in there and get her home.”
The surgery went smoothly, with doctors putting a conduit in Eloise’s heart to act as that missing valve. The conduit is made out of Gore-Tex, which led Matt to joke that she has a “winter coat” in her body.
“It’s like a really heavy-duty coat for her heart,” he says, laughing.
The Hoffmans have experience with the neonatal intensive care unit — their first children, twins, a boy and a girl, were born at 22 weeks and their daughter did not survive.
Krista says it was “rough” to see Eloise hooked up to tons of monitors and tubes. Thankfully, she healed up quickly from there and they were able to go home after about three weeks total. “They’re amazingly resilient. Adults that had open heart surgery wouldn’t heal as quickly as a baby,” Krista says.
Eloise will need at least one more surgery to put in a larger conduit — likely around age 5 or 6 — as she grows, and maybe another around her senior year of high school. But overall, “she’s doing really well.”
Krista wants parents to know that truncus arteriosus isn’t as scary as it sounds.
“For any parents who are pregnant or have truncus babies, it seems scary, but it’s not as frightening as you think it will be,” she says. “Focus on the things you can change, not the things that you can’t.”
“Every day is a fight, but in the end it gets better,” Matt adds.