"Her tongue was constantly sticking out, she was always chewing on her tongue because it took up so much room in her mouth," her mom, Madison Kienow, said.
This baby was born with a massive tongue, but after a life-altering surgery, she is able to smile for the first time in her young life.
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Little Paisley Morrison-Johnson of Aberdeen, South Dakota, was born with Beckwith Wiedemann Syndrome (BWS), a rare condition that causes the tongue to grow more than twice the size of the mouth.
"Her tongue filled up her whole mouth, it was very thick and protruding out of her mouth," her mom, Madison Kienow, 21, told Caters News. "Her tongue was constantly sticking out, she was always chewing on her tongue because it took up so much room."
For the first week of her life, Paisley breathed through intubation and for the following six months, she was fed through a gastronomy tube.
When she was well enough to go out with her parents, Kienow said strangers would stare on the streets, and pass comments.
"They would always ask me why she looked so different, and why she had such a huge tongue," Kienow said. "Doctors told us she had one of the largest tongues they had ever seen."
When she turned 6 months old, little Paisley was scheduled for her first reduction surgery.
According to Kienow, doctors cut through the middle of her tongue, and removed two inch portions from the sides.
But, the first surgery was not a success: "It looked like her tongue had grown back to its original size," the mother-of-two said.
Four months later, little Paisley underwent reduction surgery again. This time, doctors took out a more considerable amount of her tongue.
And for the first time in her life, Paisley smiled.
"Since her second surgery, her tongue hasn't grown back as much and it isn't affecting her eating or drinking out of a bottle, which is great," Kienow said.
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Now, at 16 months old, doctors are reporting that little Paisley is doing well. Despite once not even being able to breathe or eat on her own, the little girl is begining to enunciate sounds, which will lead to her eventually speaking her first words.
"She seems like a really happy baby," Kienow said. "We're really confident about her future."
While doctors are optimistic the tongue will not return to its enlarged size, nor will she have to undergo reduction surgery again, they plan to continue monitoring the 16 month old's ultrasounds and bloodwork until she turns 8 years old. According to doctors, children who are diagnosed with BWS also have a 7 to 25 percent chance of developing cancerous tumors.
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