Five years ago, Rock Hill couple Eric and Tia Brown were expecting their first child. Around 20 weeks, during their anatomy scan appointment, the first-time parents learned their unborn baby girl had Hypoplastic left heart syndrome or HLHS. The condition affects normal blood flow through the heart. As the baby develops during pregnancy, the left side of the heart does not form correctly. According to the CDC, approximately 1,025 babies are born with HLHS, each year.
“This journey is not for the faint of heart,” Tia said. “Any parent who is a parent of a child with cardiac issues… heart issues [knows] it can get pretty dicey.”
Nyla is now five years old and living a fairly, normal life. But in the beginning, Tia said there were many days filled with a lot of uncertainty.
“You never know what the next minute is going to be like; second-guessing some of the most basic child-like activities.”
But one thing the Brown’s never second-guessed was wanting to bring awareness to pediatric heart issues and help other families in need. In the beginning of their journey, during the month of February (Heart Month) the family held fundraisers and donated books, toys, clothing, and personal hygiene items to Levine Children's Hospital in Charlotte. Tia said, it was their way of “paying it forward,” but said she wanted to do more.
Fast forward to present day, the Brown’s mission has evolved to making an impact on heart health through education.
The family is working to create a scholarship for second-year students within the Cardiovascular Perfusion Program at the Medical University of South Carolina. Perfusionists are the medical team members managing the heart- lung machine during open-heart surgery.
Dr. Dave Fitzgerald is the Division Director of the Cardiovascular Perfusion Program at the Medical University of South Carolina’s College of Health Professions in Charleston. He said what the Brown’s are doing is helping heart patients in three ways.
“They’re heightening the awareness of congenital heart disease,” Fitzgerald said. “Most people may not know that about one percent of all live births in the United States have a congenital heart disease, that’s about 40,000 births a year.”
Fitzgerald said the congenital heart disease that Nyla was born with, HLHS, is far more rare. He added the Brown’s are also raising awareness about Perfusion program, itself. Which is good news for the relatively new profession; adding the very first Perfusion education program was started in 1968.
“We are a very specialized profession. The number of certified, Cardiovascular perfusionists that work in the United Sates is less than 5,000- its about 4800.,” Fitzgerald said.
With only about 18 Perfusion schools in the country, MUSC is the only one in South Carolina.
Fitzgerald said the scholarship is also helping to diversify the Cardiovascular Perfusion industry.
Both Fitzgerald and the Browns also see the scholarship work as a way to help encourage more under-represented students to pursue cardiovascular health as a career choice.
“Providing more workforce diversity and representation is important for marginalized communities and we are doing our part to make a change,” Tia said.
The Nyla Brown Scholarship is still in the fundraising stage, learn more at nylaheartscholarship.com.
