Getting closure

Wearing matching outfits and pink hair bows, strawberry blondes Rilynn and Rynleigh Stevens of Douglas, Georgia, recently enjoyed their first family trip to Disney World.

Looking at the nearly 2-year-old identical twins, one would never know that one of them had spent the better part of her infancy battling a life-threatening heart condition.

“The girls were born two months premature, so it was a high-risk pregnancy to say the least,” said Kayla Stevens, whose wife, Abrianna, gave birth to the twins during an emergency caesarean section at a South Georgia hospital. “Rilynn was always the smaller twin, mainly because her umbilical cord was tied in a knot, which led to her restrictive growth in the womb.”

Born at 32 weeks, the twins spent more than a month in a Neonatal Intensive Care Unit, where Rilynn was diagnosed with a common congenital heart defect known as a patent ductus arteriosus (PDA), in which a normal fetal blood vessel fails to close shortly after birth.

Left untreated, a PDA causes extra blood flow to the lungs and can lead to heart failure or a heart infection called endocarditis.

“They told us at the hospital that the vessel usually closes on its own. But in Rilynn’s case, it didn’t,” Stevens said.

Drowning on the inside

Over the next few months, Rilynn repeatedly had to be taken to an emergency room in South Georgia for severe breathing problems. Each time, she was treated with medications to help decrease fluid buildup in her lungs, a condition known as pulmonary edema, caused by the extra blood flow from the PDA.

“It was almost like she couldn’t breathe because she was drowning,” said Stevens.

A North Florida native who underwent ear surgery at Wolfson Children’s Hospital, herself, when she was in eighth grade, Stevens decided that the next time Rilynn developed fluid in her lungs, she was taking her to Jacksonville.

Too big to plug

That day came sooner than later for Rilynn, who was admitted through the Wolfson Children’s Emergency Department for respiratory distress when she was four months old.

Prerna Bansal, MD, a pediatric cardiologist with Nemours Children’s Health who practices at Wolfson Children’s, confirmed the diagnosis and treated Rilynn for heart failure. A cardiac CT imaging scan confirmed that Rilynn had a large opening between the aorta and the pulmonary artery, common in preterm infants.

At that point, a minimally invasive procedure known as a heart catheterization was scheduled by Nemours Children’s cardiologist Robert English, MD, to determine if the PDA could be closed without open heart surgery.

“After the procedure, Dr. English came out and said the gap was so large that none of their devices could plug it,” Stevens recalled. “He wanted to keep Rilynn in the Borowy Family Children’s Critical Care Tower’s Cardiovascular Intensive Care Unit (CVICU) so that a thoracic surgeon could perform an open-heart surgery.”

Catching up to her twin

On Wednesday, Nov. 24, 2024, the day before Thanksgiving, Rilynn had her long-awaited surgery at Wolfson Children’s.

“Dr. Bansal said her heart is functioning like it's supposed to and she’s not going to have any more issues,” Stevens said. “She’s catching up, growth-wise, to her twin sister. They’re only a few pounds apart.”

The twins, who have a big brother named Axton, will celebrate their second birthday this spring. Kayla and Abrianna just celebrated their third wedding anniversary.

“Wolfson Children’s was honestly our saving grace,” said Stevens. “We met daily with a great team of caregivers who were understanding, answered all our questions, and most importantly, listened to our concerns as parents. We felt heard and we knew Rilynn was in the best hands possible.”

Together, Wolfson Children’s Hospital and Nemours Children’s Health offer a full range of services for pediatric cardiovascular conditions. To learn more, call 904.202.8550 or visit wolfsonchildrens.com/heart. To support philanthropy efforts for children, contact the Baptist Health Foundation at 904.202.2919.