Tiny heart, big breakthrough: Norton Children's Hospital saves infant with rare surgery

Hearts have a special meaning for Heavenleigh Weilage. For one thing, she was born on Valentine’s Day 2022. For another, she was the first child in the country to receive a pacemaker so small it’s the size of a large pill.

When Heavenleigh was born at Norton Children’s Hospital at 28 weeks, she weighed only 3 pounds and had structural heart disease — holes between the chambers of her heart, as well as a complete heart block that interfered with the electrical signals that keep a healthy heart beating. She needed a pacemaker, but an operation to implant one had never been done on such a small baby. Moreover, the only pacemaker that would work had never been used on a human before.

“We had to get FDA approval pretty quickly, and we had to get emergency use authorization to approve this device for human use,” said Dr. Soham Dasgupta, a pediatric cardiologist at Norton Children’s. “This was specially engineered for the smallest of children, and in fact, Heavenleigh was the first human that we ever implanted this in the whole world.” Heavenleigh received the pacemaker when she was just 4 months old.

Now 3, Heavenleigh has received a larger device and will require a pacemaker for the rest of her life. “She’s already making a difference in the world,” said her mom, Becky Weilage. “We’re pretty popular down at the hospital. We go in, everybody knows who we are. ‘Oh, how is she? She’s gotten so big!’”

While Heavenleigh was the first to receive this type of pacemaker, she is certainly not the last. Since her procedure, as many as 45 similar pacemakers have been implanted in children across the country.