Beckwith Wiedemann Syndrome is an overgrowth disorder that affects one in every 11,000 births worldwide.
A baby girl from Aberdeen, South Dakota, stunned physicians seeing her tongue for the first time and later described it as the largest they had ever encountered in a newborn. The newborn required a breathing apparatus following the week of her birth to prevent her from chocking to death. She also had to be fed via a gastronomy tube until she was six-months old.
‘Beckwith–Wiedemann syndrome is an overgrowth disorder usually present at birth, characterized by an increased risk of childhood cancer and certain congenital features.’
Her parents Madison Kienow, 21, and Shannon Morrison-Johnson, 23, had initially hoped that their child’s mouth could grow to accommodate her oversized tongue however sadly this didn’t occur. The family, were then forced to make the difficult decision to allow doctors to perform surgery on their daughter. The first surgery however failed after surgeons removed part of the tongue as it eventually grew back.
The parents are now hopeful that 16-month-old Paisley’s second tongue reduction - which saw more than six inches of muscle removed from the organ – will work this time. “Since recovering she smiled for the very first time, I couldn’t believe it and was shocked by how beautiful my little girl looked,” said Paisley’s mother.
"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.”
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