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Few things are as touching for Mom and Dad as their baby’s first smile. But little Paisley Morrison-Johnson’s folks had to wait until she was almost a year old to savour this special moment of parenthood.
Even the seasoned doctors who treated Shannon Morrison-Johnson and Madison Kienow’s baby were stunned when the child was born 16 months ago with her tongue nearly the size of an adult’s, making it more than twice the size of her mouth.
It was one of the most unusual cases of Beckwith-Wiedemann Syndrome (BWS) the doctors had come across. The rare condition that causes oversized organs and other body parts is found in one out of every 14 000 births worldwide.
Read more: ‘My daughter is more than just the mark on her face’
Initially Paisley’s parents, who are from South Dakota in America, feared for their little girl’s life because her huge tongue made breathing and eating properly impossible.
“The doctors were initially worried it was going to affect her airways and cause her to suffocate,” Madison says. The baby therefore was put on breathing apparatus in the first week or so of her life.
PHOTO: Facebook
“We tried bottle feeding her but the doctors couldn’t find any nipple that would help her. She had to have a tube fitted because not enough food was getting into her stomach.”
The couple didn’t really object when they were told their baby’s tongue had to be made smaller as soon as possible.
“Her tongue was, of course, constantly sticking out,” her mom recalls. “She was always chewing on it because it took up so much room in her mouth.” It also looked as if her baby was constantly pulling faces, she adds.
At six months Paisley’s tongue was made about 5 cm smaller. Alas the op wasn’t successful, but luckily more extensive surgery six months later worked. After a muscle and tissue measuring 15 cm in total were removed, the baby was able to close her mouth for the first time – and finally reward her parents with that long-awaited moment. And doesn’t she have a winning smile!
PHOTO: Facebook
“I couldn’t believe it. I was shocked by how beautiful my little girl looked,” Madison says.
It was also a huge relief that Paisley could now eat without any effort at all.
“She’s like a completely new baby — her facial features look different, she laughs a lot and is getting very close to saying her first words!”
Read more: Desperate parents seek help for son born with 31 fingers and toes
Because BWS significantly increases the risk of tumours the brave little girl has to have medical examinations every three months until she’s eight. Then the risk of developing cancerous tumours caused by BWS becomes radically reduced.
PHOTO: Facebook
This is making Paisley’s grateful parents “really confident about her future”. Recently Shannon also proudly shared on Facebook: "Paisley took her real first steps today! One proud daddy right here!”
Sources: Facebook, howbigbws.com, nypost.com, express.co.uk, metro.co.uk, bws-support.org.uk
