Doctors diagnosed Paisley as being born with Beckwith Wiedemann Syndrome (BWS) – an overgrowth disorder that affects one in every 11,000 births worldwide.
Because of Little Paisley’s bad condition, she needed a breathing apparatus for the first week of her life to stop her from choking to death and was fed with a gastronomy-tube until she was six-months-old – because she couldn’t eat normally and needed vital nutrients to keep her alive.
The condition was so bad that even after surgeons cut away some part of the tongue, it grew back and covered her mouth.
Her parents Madison Kienow, 21, and Shannon Morrison-Johnson, 23, from Aberdeen in South Dakota, USA, paid for her second tongue reduction surgery which had more than six inches of muscle removed after hoping in vain that their daughter’s mouth would grow to accommodate her overgrown tongue .
“Her tongue filled up her whole mouth, it was very thick and protruding out of her mouth. It looked she had an adult’s size tongue inside the mouth of a baby. Her tongue was constantly sticking out, she was always chewing on her tongue because it took up so much room in her mouth.
When she was born, it was so enlarged that doctors worried it was going to affect her airways and cause her to suffocate. Doctors told us she had one of the largest tongues they had ever seen and that the sooner she had reduction surgery the better. But after her first surgery it looked like her tongue had grown back to its original size and was really bothering us. During her second reduction surgery a massive amount of her tongue was removed and thankfully now it goes completely into her mouth.
Since recovering she smiled for the very first time, I couldn’t believe it and was shocked by how beautiful my little girl looked. Being able to see her smile is absolutely huge for us and now she’s not even having difficulties eating which is a massive relief. She’s like a completely new baby – her facial features look different, she smiles a lot and she has even getting close 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.”
Because her tongue protruded out of her mouth and constantly stuck out it always looked like she was making silly faces. Quite often, strangers would stare at her and some would make comments. They would always ask me why she looked so different and why she had such a huge tongue.”