Strawberry-blonde hair secured with matching pink hair bows (while wearing tiny coordinating outfits, no less) — Rilynn and Rynleigh Stevens of Douglas, Georgia, were the picture of twin perfection during their first family trip to Disney World.
But behind those bright smiles is a story of courage, resilience, and a little girl who fought for every breath she took, spending 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,” says Kayla Stevens, whose wife, Abrianna, delivered the twins via emergency C-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 just 32 weeks, the twins spent more than a month in the NICU. It was there that doctors discovered Rilynn had a patent ductus arteriosus (PDA), a common congenital heart defect where a normal fetal blood vessel fails to close after birth. If left untreated, a PDA can cause extra blood flow to the lungs, putting strain on the heart and increasing the risk of serious infections like endocarditis or even heart failure.
“They told us at the hospital that the vessel usually closes on its own. But in Rilynn’s case, it didn’t,” Kayla shares.
One ER Visit After Another
Over the next few months, Rilynn’s tiny body struggled under the extra strain on her heart and lungs. She had repeated trips to the emergency room for severe breathing problems caused by fluid buildup in her lungs — a condition caused by the extra blood flow from the PDA known as pulmonary edema.
“It was almost like she couldn’t breathe because she was drowning,” Rilynn’s mom recalls.
Kayla, a North Florida native who herself had ear surgery at Wolfson Children’s Hospital in the eighth grade, knew it was time to bring Rilynn to Jacksonville for specialized care.
A Massive Gap
At four months old, Rilynn was admitted to Wolfson Children’s Emergency Department for respiratory distress. Prerna Bansal, MD, a pediatric cardiologist with Nemours Children’s Health who practices at Wolfson Children’s, confirmed the PDA diagnosis and treated the infant for heart failure. Imaging showed a large gap between the aorta and pulmonary artery, a condition common in preterm babies.
A minimally invasive procedure called a heart catheterization was swiftly scheduled by Nemours Children’s cardiologist Robert English, MD, to see 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,” Kayla says. “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.”
Finally Thriving Alongside 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,” Kayla says. “She’s catching up, growth-wise, to her twin sister. They’re only a few pounds apart.”
Now, Rilynn and Rynleigh, who have a big brother Axton, are thriving. The twins will celebrate their second birthday this spring, and Kayla and Abrianna recently marked their third wedding anniversary.
“Wolfson Children’s was honestly our saving grace,” Kayla adds. “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 range of services for pediatric cardiovascular conditions. To learn more, call 904.202.8550 or visit wolfsonchildrens.com/heart. To support pediatric philanthropy efforts, contact the Baptist Health Foundation at 904.202.2919.
My daughter is a heart warrior too born at 25 weeks 1lb 10oz and has had 4 open hearts! Recently just a week ago was her 4th one where she received her pace maker at just 4 years old. I’d love to tell her story!!