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This Baby Born With An Adult-Sized Tongue Can Finally Smile After Surgery

"The surgeon was like, 'This is the largest tongue I’ve ever seen.'"

Posted on October 15, 2016, at 5:07 p.m. ET

Paisley Morrison-Johnson, a 16-month-old born in South Dakota with an adult-sized tongue, is "doing phenomenally" after receiving a life-changing tongue reduction surgery, her mom says.

Madison Kienow
Madison Kienow

The baby's oversized tongue was a result of Beckwith-Wiedemann syndrome, a genetic condition that can cause abnormal growth of specific parts of the body. The rare condition affects about 1 in 13,700 newborns worldwide.

Paisley's mom, Madison Kienow, told BuzzFeed News she was unaware of her daughter's condition until she had an emergency C-section two months early.

"During my C-section, they got her out and noticed that her tongue was huge," Kienow said.

Madison Kienow

Doctors immediately whisked Paisley away to put her on a ventilator, thinking her tongue might constrict her airways.

"I never got to see her, touch her, hear her cry," Kienow said.

Paisley spent three and a half months at an NICU in Sioux Falls and received her diagnosis there.

At a doctor's recommendation, Paisley received her first tongue reduction surgery at 6 months old and a second one at 13 months.

Madison Kienow

"The surgeon was like, 'This is the largest tongue I’ve ever seen, especially for this small of an infant,'" Kienow said.

And "it's been so much better" since the surgery, the mother said.

"I don’t have to worry about her choking, she has started to say words, she can eat adult food, she’s starting to get her teeth now," Kienow said. "She took her first step five days ago."

And the surgery had another sweet effect: Paisley can now smile, which Kienow called "the best feeling."

Madison Kienow

"She is growing up, and she has so much spunk and personality and love," Kienow said. "She’s just amazing."

A BuzzFeed News investigation, in partnership with the International Consortium of Investigative Journalists, based on thousands of documents the government didn't want you to see.