ABERDEEN, South Dakota – A South Dakota baby born with a tongue the size of an adult’s is smiling easily after a life-changing surgery.
Little Paisley Morrison-Johnson, now 16 months old, was diagnosed with Beckwith-Wiedemann syndrome when she was born. Affecting just one in 13,700 people, the condition causes parts of the body to enlarge. For Paisley it affected her tongue and organs, according to CBS News.
Mother Madison Kienow said she counted Paisley’s toes, fingers, ears and eyes during the ultrasound, and remembers joking, “Oh cute, she likes sticking her tongue out.”
After Kienow gave birth to Paisley via cesarean section, doctors quickly new something was wrong. Paisley’s tongue was so large it completely filled her oral cavity, and they quickly hooked her up to a ventilator to make sure the newborn could breathe.
“It was a really emotional,” Kienow told CBS. “It’s still emotional. I never got to touch her. I got to see her, but I was being stitched up and they just wheeled an omni bed over to me and there I saw her, you know, just tubes and cords.”
It took multiple doctors and specialists several weeks to rule out all the other possible causes before realizing it was Beckwith-Wiedemann.
During that time, Kienow said she was constantly anxious and worried there was something she might have done wrong during the pregnancy. “But it was nothing I could have prevented. It was just what she was born with. Jesus wanted me to have something a little extra special.”
Three months after the diagnosis, Paisley had her first tongue reduction surgery, and, three months ago, she had a second, successful operation.
There is still a possibility that the tongue could grow again, but experts say most children with Beckwith-Wiedmann syndrome see the symptoms slow down with age and go on to lead normal lives.
Kienow says her little girl is still getting used to have a “baby tongue,” but is using it well – Paisely is “one of the most facial-expressed babies ever.”