ABERDEEN, S.D. — A South Dakota baby born with a larger-than-normal tongue is able to smile after successfully completing surgery.
Now 16-month-old Paisley Morrison-Johnson was born with Beckwith-Wiedemann syndrome, a condition in which affected infants grow abnormally large parts of the body. In Paisley’s case, her tongue was the size of an adult’s when she was born. She also had enlarged organs, CBS News reported.
Paisley’s tongue was so large she had to be placed on a ventilator as soon as she was born. Her tongue filled her entire oral cavity, which prevented her from breathing and swallowing.
“It was really emotional. 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,” Paisley’s mother, Madison Kienow, told CBS.
That day, Paisley was flown 200 miles away to Sanford Children’s Hospital in Sioux Falls, South Dakota. She was admitted to the neonatal intensive care unit, where she was monitored by specialists, who identified her condition. Her mother joined her the next day.
“I was blaming it on me. What did I do during my pregnancy that was wrong?” Kienow recalled asking herself. “But it was nothing that I could have prevented. It was just what she was born with. Jesus wanted me to have something a little extra special.”
Three months later, Paisley underwent her first tongue-reduction surgery. It grew back. The infant underwent her second surgery about three months ago. She had more than six inches of muscle removed.
Today, Paisley is learning to live with her “baby tongue,” and her mother said she is “one of the most facial-expressed babies ever.”
“She is one determined little girl. She has a lot of fight in her,” Kienow told CBS.
The tongue, a muscular organ, could grow back, but Paisley’s future is bright.
Experts say most children with Beckwith-Wiedmann syndrome see the symptoms slow down as they age. Most people with Beckwith-Wiedemann syndrome don’t have serious medical problems associated with the condition, and their life expectancy is usually normal, according to the U.S. National Library of Medicine.