Beckwith-wiedemann syndrome : baby paisley is born with a huge tongue

Little Paisley Morrison-Johnson was barely born when she was already in danger of suffocating: Her tongue was far too big for her tiny mouth.

The first months of little Paisley Morrison-Johnson’s life were tough: Not only was she born prematurely, but she also suffered from Beckwith-Wiedemann syndrome, a genetic growth disorder.

That means the girl was born with an adult’s tongue. Since the muscular body was much too large for the newborn’s tiny mouth, she could .

. neither eat nor drink properly, nor close her mouth. For this reason, she had to be artificially ventilated and fed through a nasal tube for the first few months of her life.

Kids like to stick their tongues out at their parents sometimes. And they usually know how to deal with it quite well. The case of Paisley Morrison-Johnson from the US state of South Dakota was different.

The little girl couldn’t help it: she was born with Beckwith-Wiedemann syndrome, a genetic defect (BWS, see box) that gave the premature infant a tongue the size of an adult’s.

Too big to breathe

Because the muscle body was much too large for the newborn’s tiny mouth, she was unable to eat, drink, or close her mouth properly. Therefore, she had to be artificially ventilated and fed through a nasal tube for the first few months.

But that was far from the worst for Paisley and her parents – Madison Kienow and Shannon Morrison-Johnson: "The tongue was so big that the doctors were afraid she might choke on it," the father told "Caters-News".

Failed surgery and stupid comments

When Paisley was finally six months old, doctors reduced the size of the tongue in surgery. For this, they removed a piece of the muscle in the middle and on each of the sides. But the tongue grew again to twice its size.

Much to the chagrin of the parents. Because her concern for her daughter was compounded by comments from outsiders: Strangers repeatedly glared at Paisley and asked why she was making such strange faces, reports "Inside Edition".

All’s well that ends well?

Four months later, the doctors put Paisley under the knife again. This time, they removed more muscle – with success, as her mother says: "Since then, her tongue has not grown back as much and no longer prevents her from eating or drinking from a bottle. That is so nice."

The little girl also seems to like the change:

"After she recovered, she smiled for the first time. I couldn’t believe how beautiful my little girl looks," says Shannon Morrison-Johnson.

However, the danger is not yet over: on the one hand, Paisley’s tongue could grow again, and on the other hand, patients with BWS have an increased risk of developing cancer. That is why the girl, who is now 16 months old, will be examined every three months – until she is eight years old. Because then the risk of developing a tumor drops significantly.

Beckwith-Wiedemann syndrome

BWS is a genetic tall stature syndrome associated with malformations and tumors and is due to a gene mutation.

For the first time in 1964, German physician Hans-Rudolf Wiedemann reported a case of enlarged tongue and distinguished it from other symptoms. In 1969, the US physician J. Bruce Beckwith the same form. Therefore, the syndrome that Wiedemann first called EMG syndrome is now called Beckwith-Wiedemann syndrome.

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