LOUISVILLE, Ky. — A Louisville baby made headlines two years ago when she received the tiniest pacemaker ever implanted into a human at that time.
Heavenleigh was born early, at just 28 weeks and five days. She desperately needed a fix for her heart, and a family who needed her just as much as she needed them. It's why her story hasn't been shared until now.
Becky and Jason Weilage got the call from St. Joseph Children's Home, in June of 2022, about a baby girl born on Valentine's Day of that year.
"That's a time when we were really working on letting our faith be bigger than our fear, so here we are," Becky said.
"I remember the first time we held her, how incredibly small and precious she was," Jason said. "She had this big toothless grin."
Heavenleigh weighed just over two pounds, and was already battling a complex congenital heart disease and something known as heart block, which resulted in an extremely slow heart rate. She needed a pacemaker.
"However, given her small size, any commercially available pacemaker was not an option, because there wasn't room," Dr. Soham Dasgupta, a pediatric cardiologist with Norton Children's Heart Institute, said.
The cardiology team at Norton Children's started making calls and landed on a device so small, and so new, it had never been used in a human.
"With the help of a device company [Medtronic], we were working on a new pacemaker planned for another patient, that didn't happen because of other circumstances," Dr. Dasgupta said.
This pacemaker was less than half the size of the smallest commercially available pacemaker. Dr. Dasgupta had it in hand within a week.
"With the help of cardiac surgeons, we were able to put in this pacemaker and thankfully it worked absolutely great," Dasgupta said. "This fit like a glove."
Heavenleigh became the first patient to receive such a tiny pacemaker, one implanted in her belly, where doctors could work with more space.
"To work on such a small baby is just miraculous, and to be able to provide this option and see it work in real time and then have good follow-ups for many months is just fantastic," Dasgupta said.
Heavenleigh's since received a larger pacemaker, and will continue to undergo similar procedures as she grows. Today, her doctor visits are more spread out, allowing more time at home, and what a wonderful time of the year it's been for the Weilage Family.
"Me and my wife have been so patient for so long to have children," Jason said.
Jason and Becky made it official on Nov. 6, when they adopted both Heavenleigh and her younger sister Mia. And while this 2-year-old may have a long road ahead, her parents are excited for the journey.
"Every day, something new is coming out and everybody says she'll be able to do what her sister can do which is amazing," Becky said. "She has continued to beat all the odds, and surprise all of us with what she can do."
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