When Paisley Morrison-Johnson was born 16 months ago, doctors worried she would suffocate. Her unusually large tongue, a symptom of an overgrowth disorder, threatened to block her airways and potentially choke the little girl. Now, the baby from Aberdeen, South Dakota, is happy and smiling for the first time ever after her second major surgery.

Paisley entered the world with a rare genetic condition known as Beckwith-Wiedemann Syndrome (BWS). This condition primarily affects growth during childhood and often presents with distinct characteristics. One of the most noticeable symptoms of BWS is an enlarged tongue, which can create challenges for feeding and speech development. Additionally, many infants with BWS exhibit red birthmarks, often referred to as "stork bites," on their foreheads, adding to their unique appearance.

In Paisley’s case, her tongue grew so big it no longer fit in her mouth, affecting her ability to breathe and eat.”Doctors tried bottle feeding her but they couldn’t find any nipple that would help her,” mom Madison Kienow said. “She had to have a [gastronomy]-tube fitted because not enough food was getting into her stomach.”

When Paisley was just one-year-old, her parents scheduled the first tongue reduction surgery to help her be more comfortable. But not long afterwards, the muscle grew back to almost its original size. They decided to try again, this time removing more than six inches of her tongue.

According to the National Institutes of Health, children diagnosed with Beckwith-Wiedemann Syndrome (BWS) require regular monitoring for tumors, particularly during the early years. However, the risk of developing cancer associated with BWS typically decreases as the child reaches around 8 years of age. It is reassuring to know that over time, any excessive or uneven growth, such as an oversized tongue, tends to slow down, and the associated symptoms of BWS should gradually diminish.

“She’s like a completely new baby – her facial features look different, she smiles a lot and she has even getting close to saying her first words,” Kienow said. “We’re really confident about her future.”