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On a quiet farm in Marshall County, Kentucky, where the land slopes gently toward Kentucky Lake, 15-year-old Penn Edwards starts most days the same way — by caring for the animals he loves, including his 215-pound mastiff. It’s a simple routine, grounded in responsibility and love. Few would guess that Penn’s heart, quite literally, made his life anything but simple from the very beginning.

Penn is the second of four children born to Justin and Natalie Edwards. His story began long before his birth, during a pregnancy that Natalie describes as unexpected and filled with uncertainty.

“Every [doctor] visit brought new news,” Natalie recalled.

During a routine pregnancy ultrasound, doctors noticed abnormalities in Penn’s heart and ordered a repeat scan. Natalie returned for the follow-up, and the experience left her unsettled.

“It just felt off,” she said. A week later, her obstetrician confirmed that something was wrong and referred her for a fetal echocardiogram.

That started the process of meeting a team of pediatric heart specialists whom Natalie and Justin would soon discover were vital to their son’s life. When Natalie was 24 weeks pregnant, her baby was diagnosed with hypoplastic right heart syndrome, a complex congenital heart defect. The news was overwhelming, but Natalie and her family found clarity as the team helped them understand the road ahead.

“Knowing what we were up against was better,” she said, explaining it gave the family a way to prepare for what was to come.

Penn’s care team included Walter L. Sobczyk, M.D., pediatric cardiologist, and Erle H. Austin III, M.D. (retired), pediatric cardiothoracic surgeon, who would become trusted partners in his care. In preparation for Natalie to deliver, the family worked through the delivery plan with the multidisciplinary congenital heart disease team at Norton Children’s Hospital. Natalie and Justin were comforted by the team’s reassurance.

“Everyone we encountered was very confident in the care they would provide to our baby upon his arrival,” Justin said.

Penn was born on March 30, 2010, at Norton Hospital — steps away from Norton Children’s Hospital. At just 3 days old, he underwent heart surgery. Before he was taken to the operating room, Natalie was able to hold her newborn son — a moment she still carries with her.

Penn spent nearly two months recovering in the hospital. When the family finally brought him home the week of the Kentucky Derby, relief mixed with fear.

“Everyone was very confident in their ability to care for my child,” Natalie said. “But I was scared to take home a fragile baby. They said it was fine, but I said, ‘I’m three hours away!’”

As Penn grew, so did the family’s hope. During a follow-up appointment, Dr. Austin delivered welcome news: the second and third planned surgeries would not be necessary. While Penn is expected to need a pulmonary valve procedure within the next five years, his doctors continue to monitor his growth carefully through outpatient testing twice a year.

Care, close to home

The Norton Children’s Heart Institute team understands the stress that a long drive puts on parents and caregivers. That’s why today, kids like Penn can get the follow-up and diagnostic heart care they need in an outpatient office closer to home. Eleven satellite offices, including one in Paducah, are staffed by pediatric specialists from Louisville, so families don’t have to sacrifice time or top-notch care for their child.