Group for families of congenital heart disease patients
JACKSONVILLE, Fla. (AP) — When Teresa Sumner was pregnant with son Rian, she and husband William were told he had congenital heart defects and Down syndrome.
When he was born in 2016, he had a hole in his heart, a collapsed lung and pulmonary hypertension, a type of high blood pressure that affects the arteries in the lungs and the right side of the heart. Within hours he was placed on cardiac and respiratory life support.
“The diagnosis of Down syndrome did not shake me one bit, it was the unknown regarding the extent of his heart defect,” Teresa Sumner said. “After Rian was born we were put through an . intense roller coaster ride that was going some insane speed. It nearly knocked the breath right out of us.”
Helping the Green Cove Springs family navigate the ride was The Healing Hearts Project, a small Jacksonville-based volunteer support group for families of congenital heart-disease patients who are being treated at Wolfson Children’s Hospital or UF Health. Founders Joy Parman and Stacey Merritt both have children with congenital heart defects.
Created in 2016 the group recently attained nonprofit status and received a $3,000 grant from the TPC Sawgrass Storytellers.
“They knew what I was going through,” Teresa Sumner said. “It was love felt from two complete strangers who had only met me virtually through Facebook messages. It meant the world. They followed our journey . and gave encouraging words when they knew I needed it most.”
Parman and Merritt took unwanted rides on that same roller coaster.
They met at Wolfson Children’s Hospital, where Parman’s daughter Kennedy was recovering from open-heart surgery. Merritt’s daughter Hope had just been diagnosed in the womb with a congenital heart defect.
A ‘heart mom’ bond formed and their friendship inspired them to begin The Healing Hearts Project.
“When you are told your child has congenital heart disease it is scary, overwhelming and can sometimes cause you to feel isolated from loved ones that don’t understand the emotional stress a diagnosis with so many unknowns can cause,” Parman said. Facing the fear “alongside someone who’s already walked that path gives both parties a sense of strength and encouragement,” she said.
Initially, they started with an online support group for local families with loved ones in cardiac intensive care to ask questions and lean on each other. But the 150 or so members wanted to do more. So they began to assemble care packages for families, including hospital-stay essentials and encouraging notes.
Later came the hospital Heart Cart, which contains fresh coffee, snacks, small toiletries and entertainment.
All the gifts were free to the families, having been donated through various groups around town. The “outpouring of local community support continued to grow,” Parman said, prompting her and Merritt to form an official board and seek a federal nonprofit designation.
“All of this gives us a sense of purpose knowing that caregivers don’t have to go through these things alone,” Parman said. “We all understand the journey and can be there to make a meaningful impact in each other’s lives.”
They provide solace when a patient dies and celebrate the milestones of recovery, such as a baby eating from a bottle instead of through a feeding tube or a medically fragile infant going home after a lengthy hospital stay.
“They are able to find another family they can relate to and see their journey,” she said. “Our support community also has adult . patients in it which gives the younger families that sense of optimism for the future.”
One of their volunteers is Stephanie Delmundo, whose daughter Rylan had heart defects when she was born in 2016. The Healing Hearts Project gave the family “tremendous support, compassion and knowledge of what to expect for our future journey.” she said.
“They checked in on us frequently and provided everyday essentials . This was a group that cared so much in a world we were thrown into,” Delmundo said. “Seeing the level of support they provide to parents in their scariest and darkest hours made me want to make a difference in the lives of families facing the tough road.”
Rylan died in November 2016, but Delmundo remained part of the nonprofit.
“She inspires us to give back to a community that gave so much to us,” she said.
The Parman and Merritt children, both of whom have had open-heart surgery, are doing well.
Kennedy, who has Down syndrome like Rian, is now 5 and in preschool. Hope is almost 3 and getting ready to start preschool.
And Rian is doing “phenomenal,” Teresa Sumner said.
The hole in Rian’s heart closed on its own, but he still has a coarctation of the aorta, which is a narrowing of the large blood vessel that leads from the heart. But surgery is not needed and his mother prays it never will be necessary.
“He definitely likes to keep us on our toes,” she said.
Support from The Healing Heart Project has been a godsend, she said.
“It is so great to share such a journey,” she said. “We get to share laughs, disappointments and so much more.”
Information from: The (Jacksonville) Florida Times-Union, http://www.jacksonville.com