“It’s like an alternate reality; not something you ever fathom.”
That’s how Verena Tetley describes the moment she learned that her unborn baby had a serious heart defect. On a recent day, Tetley sat on a park bench near her home in Port Orange, Florida, and watched lovingly as her daughter Johanna, now 4, flitted from the slide to the swings and the monkey bars.
Sitting nearby, close friend Heather Messick kept an eye on her own 4-year-old, Marissa, born with the same heart condition and giggling with glee as she raced around the playground with Johanna.
Four years ago, before they ever knew each other, the Tetley and Messick families were rocked by the same frightening diagnosis. They found themselves in uncharted territory, alone and looking for comfort and answers. Little did they know that their parallel lives would soon merge with a simple phone call.
“Finding out that my baby had a problem with her heart was challenging,” said Tetley, “but it was comforting to talk to another parent who was able to relate to what I was going through. You don’t get it unless you’ve been there.”
Johanna and Marissa were both born with Tetralogy of Fallot, a condition of several structural heart defects, including a hole between the pumping chambers of the heart and a narrowing of the passageway leading from the heart to the lungs, causing poorly oxygenated blood to circulate through the body. Both girls also have pulmonary atresia, the most severe form of Tetralogy of Fallot, where the connection that allows the blood to flow from the heart to the lungs has not developed.
Once diagnosed, both mothers had been referred to Wolfson Children’s Hospital in Jacksonville for prenatal monitoring, then to treat the girls after their birth.
Their connection came by way of Stephanie Lacey, DO, director of both the Pediatric Echocardiography Lab and the Fetal Cardiac Care Clinic at Wolfson Children’s, who realized the families both lived in the Daytona Beach area. She asked Messick, who had already delivered Marissa and been through a first surgery with her, if she would be willing to speak to another mother going through the same thing.
Messick and Tetley met and compared notes. As it turned out, they worked for the same organization. And they learned that Tetralogy of Fallot cases bring varying degrees of severity and complications, and that their girls each had specific challenges.
The support and understanding they shared was priceless, and extended to their husbands.
“My husband doesn’t really have anyone to talk to except for Verena’s,” Messick said. “They don’t talk to each other about it the same way we do as women, but they still need that support.
“It’s hard on them because they are there for us,” she added. “Dads need support, too.
Support for “healing hearts”
The Fetal Cardiac Care Clinic offers information and prenatal education for parents and loved ones, such as the type of heart defect an unborn baby has, as well as the treatments and surgeries that will be needed. Parents also can meet the pediatric cardiothoracic surgeons, and take tours of the Newborn ICU and Cardiovascular ICU.
The tours give parents a chance to see the facilities, and meet the staff who will be caring for their baby after surgery. They can ask questions and learn more about the doctors’ surgical experience and statistics.
But what many parents appreciate most is talking to each other through the Healing Hearts Project, the clinic’s support group.
“That support is crucial because it helps prepare families, and shows them that they are not alone,” said Dr. Lacey. “Everyone handles the situation differently. Some families don’t want to talk about their baby’s diagnosis, but the majority of them want the most information they can get right away.
“The direct exposure of meeting another family with a child who has a similar diagnosis, and has been in the Newborn ICU or Cardiovascular ICU, is such a helpful part of the process.”
These days, the Tetleys and Messicks don’t have to make the trek to Jacksonville, unless they need the hospital. Both families now take advantage of the outpatient pediatric cardiology services at the Wolfson Children’s Specialty Center in Daytona Beach, where they can see the same heart team that took care of their girls in Jacksonville.
“We get the same quality of care without having to make the long drive, and we really appreciate that convenience. It’s like going to Wolfson Children’s, just here in Daytona,” said Tetley.
Watching from the picnic bench as Johanna and Marissa take turns on the slide, Tetley points out that they’re really just like other little girls their age. Too young to understand that they have anything wrong with their hearts, they barely notice the scars on their chests because they’ve always been there.The knowledge of what the girls have been through and what may lie ahead is something only their parents shoulder now. However, as they grow up and come to understand, Tetley and Messick feel that their friendship will deepen into a type of support that can only be formed through shared experience.
“Today, they’re just two little girls playing together, but as they get older, we think they’ll benefit from having someone who has been through the same thing,” Tetley said. “That is our wish for them.”