What Is Beckwith Weidemann Syndrome? This Child Has Been Fighting It Since Birth

At 16 months old, Paisley Faye has already undergone more than one surgery in her lifetime. Paisley was diagnosed with Beckwith Weidemann Syndrome several weeks after she was born, and she has certainly proven to be a little fighter since. So, what is Beckwith Weidemann Syndrome (BWS)? It's a growth disorder in which specific parts a person's body grows abnormally large.

As the U.S Department of Health & Human Services describes it, BWS is: "considered a clinical spectrum, in which affected individuals may have many of these features or may have only one or two clinical features." Some typical effects of BWS is Macroglossia, or an abnormal enlargement of the tongue.

The HHS describes how an infant or child diagnosed with BWS typically progresses over time:

Growth begins to slow by about age 8, and adults with this condition are not unusually tall. In some children with Beckwith-Wiedemann syndrome, specific parts of the body on one side or the other may grow abnormally large, leading to an asymmetric or uneven appearance. This unusual growth pattern, which is known as hemihyperplasia, usually becomes less apparent over time.

In Paisley's case, her mom Madison Kienow told CBS news that, after she gave birth to Paisley at 31 weeks, she soon learned her daughter was born with enlarged organs and an enlarged tongue, which affected her breathing, causing her to be put on a ventilator.

"It [was] really emotional," Kienow told CBS News. "It’s still emotional. I never got to touch her. I got to see her, but I was being stitched up and they just wheeled an omni bed over to me and there I saw her, you know, just tubes and cords."

Kienow told CBS that doctors couldn't initially figure out what was wrong with Paisley. She had to be flown from Aberdeen, South Dakota, to Sioux Falls, South Dakota — about three hours away — to see specialists. She was eventually diagnosed with BWS and underwent her first tongue reduction surgery in September of last year. Kienow shared details of Paisley's surgeries on a GoFundMe account she created last year.

But as CNN reported, Paisley's parents noticed the little one's tongue had continued to grow since the tongue reduction surgery. Paisley's doctor, Dr. Patrick Munson, told CNN that Paisley had to undergo a second tongue reduction surgery about three months ago.

"Her tongue has significantly increased in size and she is the first patient that I have ever had to do a repeat anterior wedge resection on," Munson said. "That operation was done at 13 months of age and she has been able to resume appropriate oral feeding."

Munson has been monitoring Paisley as she has been recovering since her last surgery, CNN reported. She's currently in speech, occupational, and physical therapy.

And with her surgeries behind her, Kienow told CBS that Paisley "is one determined little girl" with " a lot of fight in her."

There's no doubt that Paisley is a fighter. To donate To Paisley's GoFundMe account, visit this website.