An Illinois toddler is finally ready for winter weather after going through open-heart surgery as a baby for a rare heart condition.
Eloise Hoffman, who will turn 2 next month, was brought into the world with truncus arteriosus, a heart condition where just one blood vessel exits the heart instead of the usual two. The life-threatening issue meant that oxygen-rich blood was intermingling with oxygen-poor blood, requiring immediate treatment.
Eloise’s parents, Krista and Matt Hoffman, both 38, found out about 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 rare for newborns and typically clears up in a couple days. But hers stayed active, 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 sources. “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 quickly needed to go to the hospital by ambulance so she could be hooked up to oxygen and medication before eventually undergoing an open-heart procedure.
“With truncus you need surgery within the first few weeks of life, or else they start to go into heart failure,” Krista states.
The Hoffmans, who also have two boys aged 4 and 5, had to wait about a week for the surgery, and they say that those days and nights were far more fraught than the four to five hours when Eloise was actually in surgery.
“The least stressful part of the whole thing was when she was in surgery, because we knew that she was in good hands,” Matt adds. “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.”
Krista agrees, “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 off without a hitch, with doctors putting a conduit in Eloise’s heart to perform as that missing valve. The conduit is made out of Gore-Tex, which led Matt to play 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 wing of the hospital — 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 piles of monitors and tubes. Thankfully, she healed up rapidly 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 bigger 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 her mom and dad 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.