400 HEARTS
The Healing Hearts project connects families during tough times, lends understanding
Congenital heart defects (CHD) are the most common birth defect in the United States. One in every 100 children is born with one. For Duval County, that translates into roughly 125 children each year.
Joy Parman’s youngest daughter, Kennedy, was diagnosed in 2012 with prenatal complications that included a congenital heart defect. Against odds, Kennedy survived. Roughly two years later, Kennedy had recently undergone a heart surgery and Parman found herself in a position to support and mentor another mother, Stacey Merritt, who was navigating a CHD diagnosis for her own daughter in utero.
“We had this heart-mom bond,” said Farifax resident Parman. “For her, it was nice to have someone who’s been through this to talk to; for me, it was nice to have someone to share this with who really understood it.”
“We couldn’t believe that in this big, huge city of ours, there was no type of support for the families that were going through this.”
Kathryn Villano, a maternal and fetal medicine specialist with Regional Obstetrics Consultants, had served as the high-risk obstetrician for both Parman and Merritt. She was an advocate for the ladies, helping them find resources to get started, and identifying needs at the hospital. The ladies’ bond marked the beginning of what would become The Healing Hearts Project.
Today, The Healing Hearts Project has around 400 families in its support group. 400 hearts. 400 families now one community strong. It has an engaged board, and two annual fundraisers, including the upcoming Roaring 5th Annual Pour Your Heart Out event on October 22 at Friday Musicale.
Dana Nolan, owner of VUE Optical in Avondale, and board vice chair of The Healing Hearts Project, believes that families really relish that sense of connection.
“It helps those families know they are not alone. It helps to talk about it, get it off your chest, and to have somebody that understands what you’re going through,” said Nolan.
Fueled by community giving, The Healing Hearts Project provides both online and in-person group support to families affected by CHD, as well as educational series. Its Rylan Fund provides one-time financial relief for families. The organization has a space in the cardiovascular intensive care unit at Wolfson Children’s Hospital that it keeps stocked with coffee, snacks and toiletries, offered free of charge to admitted families. It also provides a complimentary meal gift card to families on surgery day.
Parman stressed the importance of the medical teams to the organization. For the first time this year, The Healing Hearts Project bestowed nurse training awards to give back to the healthcare workers for “loving on our heart families.” Partnering with the hospital, it is sending two cardiovascular nurses to attend the educational Annual Pediatric and Congenital Cardiovascular Disease Conference.
For board treasurer Donya Marshall, it was actually her daughter’s CHD diagnosis led to a career change to nursing.
“We didn’t have a clue about the medical system, and insurance, and services, and all the things that come with having a medically-complex child. There were no resources. I felt so lost and alone,” said Marshall.
“I went back to nursing school while she was in the hospital to be home and have flexibility. I tried to immerse myself and learn all that I could. When Healing Hearts came along, it was such a great thing that somebody was providing that service that I know myself was not available.”
Marshall said the organization’s biggest challenge is awareness. Despite its commonplace, few people know resources exist.
“I love being able to help others not feel alone, and be able to navigate the whole system: insurance authorizations, supplemental insurance, all these things that you shouldn’t have to think about when you are day-to-day wondering if your child is going to be alive. That’s what motivates me every day to keep being involved and keep trying to advance our knowledge as a board and as a community, so we can turn around and help other
By Lindsey Gast
Resident Community News
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