Raising a child with an unusually large tongue is a trying process for parents. Paisley, at just 16 months old, embarked on a life journey filled with challenges, but her parents never stopped gripping onto hope. Beckwith-Wiedemann syndrome, a rare overgrowth disorder present at birth, manifested in Paisley through enlarged body parts and internal organs, particularly affecting her tongue.
Desperate moments turned into discovery when Madison Kienow counted Paisley’s fingers, toes, eyes, ears, and tongue during routine ultrasounds. She chuckled, “Oh, so sweet, she likes to stick her tongue out,” unaware of the hereditary disease lurking in the background. Little did she know that her pleasant day would be replaced by panic and anguish.
At 31 weeks pregnant, Kienow underwent a cesarean section to give birth to Paisley. What should have been a moment filled with tears of joy turned into a nightmare as Paisley immediately needed to be placed on a ventilator. Her swollen organs and a tongue that filled her oral cavity left no room for celebration.
Kienow recalled, “There was genuine emotion. It is still painful. Never did I get to hold her.” Instead, she was confined to a hospital bed, recovering from surgery, while her daughter lay connected to tubes and wires. Doctors were baffled by Paisley’s condition but recognized the urgency of action. They informed Kienow that her daughter needed to be airlifted to a specialist in Sioux Falls, a three-hour journey from Aberdeen, South Dakota.
Paisley was admitted to Sanford Children’s Hospital’s neonatal intensive care unit. Kienow’s anxiety grew as she met with a team of specialists who initially had no definitive answers. However, after weeks of testing and experiments, the medical professionals finally identified the solution: Beckwith-Wiedemann syndrome.
Kienow, overwhelmed with guilt during her pregnancy, had questioned herself, wondering, “What did I do wrong?” She realized that it was not her actions but something inherent to Paisley’s birth. She found solace in the belief that Paisley’s unique journey was part of a greater plan.
With a diagnosis in hand, Kienow now meets with medical professionals to explore treatment options for Paisley’s enlarged tongue. Three months after her birth, Paisley underwent her first tongue reduction surgery.
Paisley’s story is a testament to the resilience of parents and the unwavering love that guides them through challenging times. Despite the difficulties they faced, Madison Kienow continues to stand by Paisley’s side, determined to provide her with the best care and support on her remarkable journey through life with Beckwith-Wiedemann syndrome.
