Paisley, a sixteen-month-old South Dakota native, was born with Beckwith-Wiedemann syndrome, which causes enlarged organs or bodily parts and effects approximately 300 American newborns annually. Due to her condition, her tongue was twice the size of her small mouth. “Her tongue was always sticking out, and she was constantly chewing on it because it took up so much room in her mouth,” said Madison, her 21-year-old mother. “It always appeared as though she was making goofy expressions.
Doctors were concerned that her tongue was so large that it would suffocate her at birth, requiring them to connect her to a ventilator to ensure she was inhaling correctly. She had 5 centimeters of her tongue removed when she was six months old, but this did not seem to make matters any better. It was her second life-saving surgery, in which a significant portion of her tongue was removed, that allowed her to close her mouth completely.
“I never got to see her, touch her, or hear her cry,” said Kienow.
Paisley spent three and a half months in a Sioux Falls NICU, where she was diagnosed.
Paisley had her first tongue reduction surgery at 6 months of age and a second one at 13 months on the advice of her doctor.
The surgeon remarked, “This is the largest tongue I’ve ever seen on such a small infant,” according to Kienow.
And “it’s been so much better” since the surgery, according to the mother.
“I no longer have to worry about her choking because she has begun to speak, she can eat adult food, and she is beginning to get teeth,” Kienow added. “She took her very first step five days ago.”
Paisley is now able to smile, which Kienow refers to as “the best feeling.”
“Since recovering, she has smiled for the very first time,” Madison said. I was stunned and unable to believe how lovely my daughter looked. And Paisley is close to uttering her first words. “Before, because of the size of her tongue, she couldn’t even make the sounds to say words like’mama’ and ‘dada,’ so this feels like a monumental accomplishment,” she said.
The child will be monitored every three months until she reaches eight, at which point the likelihood of her developing cancerous tumours caused by the syndrome will decline considerably, according to the physicians.
“She is maturing, and she has so much spirit, personality, and affection,” Kienow stated. “She’s just amazing.”
