WINCHESTER — When Laura Carpenter arrived for her regularly scheduled, 20-week ultrasound, she had no idea that she would leave the appointment with information that would change her — and her baby’s — life.

On the day she and her husband expected to learn the sex of their child, they also learned that the infant would be born with a congenital heart disease, or CHD.

“The floor came out from underneath me and I was sure that I had done something terribly wrong,” Carpenter said, knowing little about the diagnosis at the time. “You feel like you have destroyed your child’s life before it even began.”

Her daughter, Gwenyth, is one of numerous children with CHD whose family has participated in the Zipperstrong Project, a photography initiative by Winchester resident SheRae Hunter to raise awareness about those born with various forms of congenital heart defects.

About one in every 110 infants born in the United States has CHD, according to the Children’s Heart Foundation. This equates to one child every 15 minutes, over 85% of which live to at least 18 years old.

In 2010, Gwenyth passed away from overwhelming sepsis at 2 months old. Once Carpenter discovered the Zipperstrong Project seven years later, Gwenyth’s siblings were able to be photographed in remembrance of her.

“It was such a beautiful way to honor my daughter and to still be raising CHD awareness,” Carpenter said.

Hunter founded the Zipperstrong Project in 2015 after reading stories on Facebook about families whose young ones were born with CHD. She decided that she wanted to do something.

Already a photographer with her own business that specializes in capturing children, Hunter began networking with CHD families on social media to schedule their first meet-up.

Through photography, she aimed to highlight each subject’s zipper-like scar from open heart surgery while still portraying their strength. The name “Zipperstrong” was born from those initial goals.

“What I wanted to convey was the strength that they had, and the joy, and the fact that they are just like any other kid, but they’ve been through these battles and they have the scars to prove it,” Hunter, a mother of five, said. “They are not really to be pitied, but they’re warriors and they’re celebrated.”

Children who participate are able to befriend other young ones who share their scar, Carpenter said.

Not only do children benefit, but also their families, she said. Parents are able to learn more about congenital heart defects and, in cases like Carpenter’s where the child has passed away, siblings are able to be involved as well.

During February, which is American Heart Month, Hunter hopes to raise more awareness about her project and CHD.

“I felt like it’s almost my responsibility if I have a talent to use it for the building of my community,” Hunter said, mentioning her Christian faith. “I try to do it to make Winchester a better place to live.”

There have been seven Zipperstrong sessions so far and the next event is being planned for 2025.

Portraits from the project have been featured on the walls of numerous hospitals, including some which currently hang at Winchester Medical Center.

Images from the most recent photo shoot, which was in 2022, were displayed in Children’s National Hospital in Washington, D.C., Inova L.J. Murphy Children’s Hospital in Falls Church, Johns Hopkins Children’s Center in Baltimore and University of Virginia Children’s Hospital in Charlottesville.

Four mothers whose children were diagnosed with a CHD, including Carpenter, have been pivotal in the initiative’s continued growth and bringing Hunter’s vision to life. Now, there are so many interested families that only some can be included in each chapter of Zipperstrong.

“Zipperstrong really focuses on just how each life is so unique and beautiful,” Carpenter said.

Carpenter expressed that it is important for parents to share concerns with their doctors and nurses, without fear of being “that mom.” She said she wishes she had trusted her instincts that something was not right with Gwenyth and spoke up.

Gwenyth passed away due to neonatal alloimmune neutropenia (NAN), which is a lack of white blood cells and the resulting inability to fight infection effectively. Prior to this, she underwent successful open heart surgery for her CHD at 2 days old.

Because her pediatrician was so focused on her heart, they overlooked the symptoms of NAN. The same doctors also did not thoroughly read their discharge papers from the hospital where Gwenyth had surgery, which diagnosed the infant’s blood condition.

Had they done so, her daughter’s story would likely have had a different ending, Carpenter said. It was not until the autopsy that they realized Gwenyth’s cause of death was not CHD.

“Her life to me is such a light that I want to shine for people who are trying to figure out what their next step is and I just want to give them the confidence that I didn’t have,” Carpenter said.

Unlike other CHD-related organizations for which Carpenter has volunteered, she is able to be on the front lines of advocacy and awareness at Zipperstrong. In the past, because her family’s story is a more difficult reality to swallow, she was not able to share Gwenyth’s life so passionately.

“Now, I know how many families have faced this from all walks of life,” Carpenter said. “And I know it was not my fault, and I know there’s not enough research to tell me what happened, and I know there’s still too many families that have never heard of it.”

Hunter can be reached at 757-719-4460 or contact@slhunterphotography.com