New infant heart stent offers fresh hope for Georgia families
Twenty-four weeks into her pregnancy, Serena Chen and her husband received unexpected news: a fetal echocardiogram revealed that their daughter, Chloe, would be born with a congenial heart defect that would require immediate care.
Referred to Children’s Healthcare of Atlanta, they learned the full extent of Chloe’s condition — pulmonary atresia, a rare heart defect where the pulmonary valve doesn’t form properly, affecting blood flow from the heart to the lungs.
“We kind of started planning from there, you know, and we tried to take it as well as we could,” Allen Chen, Chloe’s father, told The Atlanta Journal-Constitution. “It was a very emotional day.”
The Chens, from Woodstock, began working closely with Children’s and Chloe’s medical team, preparing for a future filled with doctor’s visits and complex heart surgeries. But everything changed when Children’s introduced a new technology — one of the first of its kind in the country — that offered hope.
Earlier this year, the FDA-approved their first stent created specifically for infants, completely changing the medical landscape for Chloe and many families’ like her own.
“Truly a novel and innovative technology in our space,” said Dr. Allen Ligon, a pediatric cardiologist at Children’s and assistant professor at Emory who performed a procedure for Chloe.
Called Minima, the stent was developed by Renata Medical and received FDA approval last fall. Other stents typically used in infants are unable to expand into adulthood, which “commits them to another heart surgery in their journey,” Ligon explained. The new stent system can be implanted in infants, and can later be dilated — similar to a balloon — up to adult size.
“Ultimately, the goal is that she won’t have to have another heart surgery to take out that stent and to rehabilitate that right lung artery,” Ligon said.
Before the technology was officially developed, Children’s had been utilizing similar stents that were FDA-approved for this particular use. However, those could lead to possible difficulties down the road, Ligon explained.
Children’s is one of only nine medical facilities across the country currently implanting these FDA-approved stents in small infants. Even with approval, the FDA requires ongoing, closely monitored follow-up.
“We’re part of that group because we feel like it’s a technology that’s truly gonna revolutionize, care for our congenial heart disease patients,” Ligon said. “There’s no greater accomplishment in my mind than decreasing heart surgeries over a kids’ lifetime.”
For Chen and his family, getting Chloe’s stent was a complicated journey with many moving parts. At around five months old, she had open-heart surgery to implement a patch, which is a device that serves as a short-term solution for bridging the pulmonary artery to the right ventricle. However, the patch can “pull” on one’s arteries, meaning possible long-term negative effects even after it’s taken out.
Soon after the surgery for the patch was completed, which Chen called “kind of a small miracle in of itself,” they were made aware of the Minima stent. When Chloe was just under one-year-old, the stent was put in successfully, and she and her family were able to go home.
Going into a procedure with a newly approved technology would be nerve-wracking for most, but Chen believes he was as well-prepared as one could be.
“I think it’s because Children’s Healthcare probably prepared for the worst case scenario and the best case scenario,” Chen said.
Today, Chloe is 18 months old and according to her father, she’s “living her best life” — and has even gone on three cruises.
This Thanksgiving, the Chen family returned to Children’s to help provide and deliver meals to families in the cardiac ICU. After spending the last Thanksgiving in the hospital during Chloe’s heart surgery, they wanted to give back to the community that had supported them during one of their hardest moments.
“There are things that happened in Chloe’s life which have obviously not been positive, but as far as the things that have happened and the way that they’ve panned out, it’s been kind of a blessing for us,” Chen said.
