Paisley, a baby born with Beckwith-Wiedemann Syndrome, defies the odds with an unforgettable smile. At just 16 months old, she continues to grin despite the challenges she faces due to the condition. Her enlarged tongue and affected internal organs are no match for her unwavering positivity. Paisley's remarkable spirit serves as an inspiration, reminding us all to embrace joy and resilience in the face of adversity.
At just 21 years old, Madison Kienow experienced a mix of surprise and laughter during her ultrasounds when she noticed her baby girl sticking out her tongue. Little did she know that this seemingly adorable habit was actually a symptom of a rare hereditary disease. The joyous day of giving birth to Paisley at 31 weeks turned into a frantic one, as her swollen organs and fully filled oral cavity required immediate medical intervention. Placed on a ventilator, Paisley's journey began with challenges and uncertainty. However, fueled by love and determination, Madison remains steadfast in her commitment to provide the best care and support for her daughter, celebrating every small victory along the way.
Amidst genuine emotions, the pain of not being able to hold her newborn daughter lingers for Madison Kienow. Due to receiving sutures, she was unable to have the cherished moment of cradling her baby. Instead, she caught a glimpse of Paisley surrounded by tubes and wires on an open bed. The doctors were perplexed by the situation but recognized the urgent need for action. Informed that Paisley required specialized care, they arranged for her to be airlifted to a specialist in Sioux Falls, a three-hour journey from their hometown of Aberdeen, South Dakota.
Paisley was admitted to Sanford Children's Hospital's neonatal intensive care unit, where she would receive specialized care for her condition. The next day, Kienow was finally able to join her daughter in the hospital. Initially, she felt disheartened after consulting with a group of specialists who couldn't provide a definitive answer. However, after several weeks of extensive tests and examinations, the medical professionals were able to identify the root cause: Beckwith-Wiedemann syndrome. This breakthrough brought clarity to Paisley's condition, providing a starting point for her treatment and care.
Amidst her journey, Kienow found herself grappling with self-accountability. During her pregnancy, she questioned herself, wondering if she had done something wrong to cause her daughter's condition. However, she soon realized that it was a trait passed down from birth. Kienow found solace in the belief that this uniqueness was something destined for her by a higher power.
With the long-awaited answers in hand, Kienow actively engages with medical professionals to explore treatment options for Paisley's enlarged tongue. Three months later, Paisley undergoes her first tongue reduction surgery, marking an important step in her care and journey towards improved health.
The memory of the surgeon's exclamation, "Wow, that was surgery," resonates deeply with Kienow as she recalls the moment he entered the recovery room after Paisley's tongue reduction procedure. Despite the challenges they faced, Kienow finds comfort in knowing that her daughter's tongue, being a muscular organ, has the ability to regenerate. Fortunately, only one additional operation has been necessary for Paisley since then, and that occurred approximately three months ago. Specialists assure Kienow that growth disturbances often subside as children age, and the majority of individuals with Beckwith-Wiedemann syndrome go on to lead healthy adult lives. This knowledge instills hope and optimism as they navigate Paisley's journey towards a bright and healthy future.
As per Kienow, her 16-month-old daughter has fully embraced her "baby tongue" and is blossoming into one of the most expressive babies she has ever seen. The proud mother joyfully shares that Paisley has made remarkable progress over the past 18 months. With determination and resilience, Paisley has emerged as a tenacious young lady, brimming with grit and a zest for life. Witnessing her daughter's growth and development fills Kienow's heart with excitement and pride, as they continue to navigate their unique journey together.
