An American baby born with an adult-sized tongue can finally breathe, and smile, on its own.
Sixteen-month-old Paisley was born in South Dakota with Beckwith-Wiedemann syndrome, which causes overgrown organs or body parts and affects about 300 American newborns a year. In her case, the condition made her tongue twice the size of her little mouth. “Her tongue was constantly sticking out, she was always chewing on her tongue because it took up so much room in her mouth,” said her 21-year-old mother Madison. “It always looked like she was making silly faces.
Doctors were worried her tongue was so large, it would suffocate her when she was born – forcing them to hook her up to a ventilator to ensure she was breathing properly. At six months old, she had 5 centimetres clipped off her tongue, but it didn’t seem to make things much better. It was her second life-saving surgery, which removed a significant portion of her tongue, that enabled her to fully close her mouth.
“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.
Kienow said that “The surgeon was like, ‘This is the largest tongue I’ve ever seen, especially for this small of an infant,'”
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 added. “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.”
“Since recovering, she smiled for the very first time,” Madison said. “I couldn’t believe it and was shocked by how beautiful my little girl looked.” And Paisley’s well on her way to saying her first words. “She couldn’t even make the sounds to say words like mama and dada before because of the size of her tongue, so this feels like a massive achievement,” she said.
The tot will be monitored every three months, until she turns eight – when the chances of her developing any cancerous tumours triggered by the syndrome drop dramatically, doctors said.
“She is growing up, and she has so much spunk and personality and love,” Kienow said. “She’s just amazing.”