At the age of 16 months, Paisley displayed unwavering resilience, despite the challenges she faced early in life. Beckwith-Wiedemann syndrome, an overgrowth disorder characterized by enlarged body parts, organs, and various symptoms, was evident from birth. It affected Paisley’s tongue and internal organs.

Despite Madison Kienow counting the baby’s fingers, toes, eyes, ears, and tongue during two ultrasounds, she didn’t realize hereditary disease’s presence that causes such traits. The 21-year-old mother chuckled at the moment, saying, “Oh, so sweet, she likes to stick her tongue out.” Unbeknownst to her, a rare hereditary condition was responsible for this.

Madison underwent a cesarean section to deliver baby Paisley at 31 weeks. Kienow couldn’t comprehend the panic and distress that replaced what should have been a joyous day filled with tears of happiness. Her daughter needed immediate placement on a ventilator due to swollen organs and a tongue that entirely filled her mouth.

“There was genuine emotion. It’s still a painful memory. I never got to hold her. I went to see her, but they just brought out an open bed for me since I was receiving sutures, and there I saw her with nothing but tubes and wires,” Kienow told CBS News. According to Kienow, doctors were initially unsure about what had transpired, but they recognized that immediate action was necessary. They informed Kienow that her daughter needed to be airlifted to a specialist in Sioux Falls, which was a three-hour journey from Aberdeen, South Dakota.

The infant was transferred to Sanford Children’s Hospital’s neonatal intensive care unit. The following day, Kienow was able to join her daughter.

Initially, Kienow felt disheartened after consulting with a group of specialists who couldn’t provide a definitive answer. However, after several weeks of medical tests and experiments, they eventually identified the solution: Beckwith-Wiedemann syndrome.

“I held myself accountable. During her pregnancy, Kienow recalled questioning herself, ‘What did I do wrong?’ But I couldn’t have prevented it. She simply has it from birth. It seems like a unique blessing from God,” she said.

Now that Kienow has the answers she’s been seeking, she’s in discussions with medical professionals to explore treatment options for Paisley’s enlarged tongue. Three months later, Paisley underwent her first tongue reduction surgery.