A Special Gift: Accepting the Arrival of a Baby Born with an Extra-Large Tongue

Baby girl Paisley was born with a rare condition that caused her tongue to measure more than double the size of her mouth making it virtually impossible for her to ever smile.

When she was born stunned physicians recalled seeing her tongue for the first time and later described it as the largest they had ever encountered in a newborn.

She was later diagnosed with Beckwith Wiedemann Syndrome, an overgrowth disorder that affects one in every 11,000 births worldwide.

Baby Paisley was born with the rare condition, Beckwith Wiedemann Syndrome.
Baby Paisley was born with the rare condition, Beckwith Wiedemann Syndrome.
Paisley following life-changing tongue op. Source: Supplied.

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.

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, from Aberdeen, South Dakota, 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,” Paisley’s mother, a pre-medical student said in her first interview.

Paisley, now 16-months-old, had her second tongue reduction surgery six months ago. Source: Supplied.

“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.”

Doctors are hopeful that Paisley won’t need further tongue reduction surgery.

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