Published: December 11, 2024
Anyone who’s met Heavenleigh falls in love with her grin. It’s been winning people over since she was an infant.
Heavenleigh has an even bigger reason to smile these days. Almost three years after receiving the first specially-designed, tiny pacemaker for a premature infant, she is now officially adopted by the family who raised her.
A tough beginning
Heavenleigh arrived in this world (fittingly) on Valentine’s Day 2022 at just 28 weeks. She had a variety of medical conditions, but most significant was congenital complete atrioventricular block (CCAVB), which resulted in an extremely slow heart rate.
CCAVB is rare — about 1 in 22,000 infants have it — but the condition can be fatal. It’s typically treated by implanting a pacemaker to keep the heart beating at a normal rate.
Most babies with the condition are large enough to receive a pacemaker within the first weeks of birth. At 2 pounds, Heavenleigh was not.
“Even the smallest pacemakers on the market were too big for Heavenleigh,” said Soham Dasgupta, M.D., a pediatric electrophysiologist with Norton Children’s Heart Institute. “We needed another plan.”
Heavenleigh makes history
Dr. Dasgupta and Christopher L. Johnsrude, M.D., director of pediatric and adult congenital electrophysiology at Norton Children’s Heart Institute, reviewed data on a tiny, modified pacemaker known as an implantable pulse generator (IPG). The IPG had been successfully implanted in an adult Yucatan miniature pig, which has a heart resembling a small child’s. Despite the device not having been tested in a human, results appeared promising for a person Heavenleigh’s size.
After intense research and examination, Dr. Dasgupta worked with Norton Children’s Research Institute, affiliated with the UofL School of Medicine, and the device manufacturer to obtain local Institutional Review Board approval and emergency use authorization from the U.S. Food and Drug Administration.
The Norton Children’s heart team implanted the device during a two-hour open heart surgery in March.
“It was remarkable how everyone came together to offer a solution,” Dr. Dasgupta said. “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 is just fantastic.”
Following surgery, Heavenleigh continued to grow and receive treatment in the Norton Children’s Hospital neonatal intensive care unit (NICU). But now she needed something else: a family. Shortly after birth, Heavenleigh had been placed into foster care.
‘Letting our faith be bigger than our fear’
Becky and Jason Weilage were looking to adopt. The couple had been going through the process for over a year, but nothing had panned out. Yet, they were hopeful a child was out there waiting for them.
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In June 2022, they received the phone call that would change their lives. They were taken to the NICU to meet Heavenleigh for the first time. Despite Heavenleigh’s complex medical needs, the Weilages fell in love.
“I remember the first time we held her, how incredibly small and precious she was,” Jason said. “She had this big toothless grin.”
But with the excitement came worry.
“I remember sitting down with one of the NICU doctors, like ‘What do I do? How do I take care of her?’” Becky said. “That was a time when we were really working on letting our faith be bigger than our fear.”
While the Weilages worked on the adoption process, Heavenleigh spent the next few weeks in the NICU. Jason and Becky came to visit daily.
“We had a therapist from the NICU tell us she improved once we were there to hold her and love on her,” Becky said.
In July, they took her home.
Continuing to thrive with her new family
Since the initial surgery, Heavenleigh has undergone two additional procedures, for repair of her congenital heart disease and upgrade to larger commercially available pacemakers, and will have more in the future.
Today, her doctor visits are more spread out, allowing more time at home to be a family, which is now official. On Nov. 6, 2024, Jason and Becky formally adopted Heavenleigh and her younger sister, Mia.
The Weilages couldn’t be happier.
“She has continued to beat all the odds and surprise all of us with what she can do,” Becky said. “For all of us, Heavenleigh is truly a miracle.”