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 was born with B̲e̲c̲k̲w̲i̲t̲h̲ ̲W̲i̲e̲d̲e̲m̲a̲n̲n̲ ̲S̲y̲n̲d̲r̲o̲m̲e̲ ̲ a genetic condition that affects growth during childhood. The most noticeable symptom is usually an oversized tongue, but many babies with B̲W̲S̲ also have red birthmarks called “stork bites” on their foreheads, according to a support group called H̲o̲w̲ ̲B̲i̲g̲ ̲B̲W̲S̲. More importantly, the condition is associated with an increased risk of cancer, especially liver and kidney tumors.
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.
“Since recovering, she smiled for the very first time. I couldn’t believe it and was shocked by how beautiful my little girl looked,” Kienow said. “Now she’s not even having difficulties eating, which is a massive relief.”
According to the N̲a̲t̲i̲o̲n̲a̲l̲ ̲I̲n̲s̲t̲i̲t̲u̲t̲e̲s̲ ̲o̲f̲ ̲H̲e̲a̲l̲t̲h̲, children with need to be monitored regularly for tumors, but the risk of cancer drops at about 8-years-old. Any fast or asymmetric growth also slows over time, so Paisley’s symptoms should slowly go away.
“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.”
