Families, researchers and clinicians recently came together to raise awareness and celebrate how regenerative research enhances the lives of individuals with Hypoplastic Left Heart Syndrome (HLHS), a rare congenital heart disease.
HLHS is a rare and complex form of congenital heart disease in which the left side of a child's heart is severely underdeveloped. Regenerative medicine strategies for HLHS is one of several approaches the Center for Regenerative Medicine is studying that goes beyond disease management to search for and discover therapies that support the body in repairing, regenerating and restoring itself to a state of well-being.
Kids with HLHS, "often don’t meet other people like themselves," according to Brianna Tranby, senior research program coordinator in the Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome. That's one reason the annual — and cleverly named — "Feel the Beat" event is something of a homecoming for HLHS patients and their families, the HLHS research coordinator tells us. "We had 142 attendees this year," she says. "Many had attended the event previously, but some were first-timers who had never met someone else with HLHS."
The event was created in 2013 as a way to “bring HLHS families together and thank research participants for their contributions” to ongoing HLHS research, Tranby says. This year, one of those research participants took center stage, literally and figuratively. Naomi Babcock's story shows how much someone living with HLHS is capable of achieving despite the physical and emotional tolls of the rare condition.
"Naomi is an 18-year-old high school senior with HLHS who's in full-time training to be a professional ballerina," Tranby tells us. During a panel discussion at the event, Naomi and her mom, Kelly, talked about Naomi's experiences "growing up with HLHS, the physical demands ballet has had on her body, and what it's been like for her to leave home and take care of herself while also managing her condition."
Then Naomi showed her fellow patients just what was possible, performing a ballet routine for those attending the event. “I think it was important for other people with HLHS to see that so they know HLHS is something you can actually live with," Tranby says. "You can live to adulthood and still do physical activities. That’s something that’s really important to our HLHS program at Mayo Clinic and is what inspires the groundbreaking research we're doing.”
That research is something Tranby tells us Mayo Clinic cannot do on its own. "The Todd and Karen Wanek Family Program for HLHS was started at Mayo Clinic in 2010," she says. "Because the condition is so rare, no single hospital sees many HLHS patients, which makes research challenging." So in 2017, Mayo Clinic created a nationwide HLHS Consortium to align centers of excellence and collaborate in clinical trial research. The consortium, now up to eight members, includes both hospitals and patient/family advocacy groups with the shared goal of improving the lives of people with HLHS through research.
People like Naomi Babcock and 140-some friends who attended this year's "Feel the Beat" event.
This story first appeared on Mayo Clinic’s In the Loop blog.