A baby girl born with Bᴇᴄᴋᴡɪᴛʜ-Wᴇɪᴅᴇᴍᴀɴɴ syndrome has had life-changing surgery to correct her enlarged tongue, which had grown to twice the size of her mouth and was obstructing her breathing and feeding. Paisley Morrison-Johnson, from Aberdeen, South Dakota, USA, is one of the 11,000 babies worldwide affected by this overgrowth disorder. She had to be fed with a nasogastric tube during the first few months of her life.
After the successful surgery to reduce her enlarged tongue, Paisley, who is 16 months old, has been able to smile for the first time, according to her parents, Madison Kienow and Shannon Morrison-Johnson. During the surgery, parts of her tongue were removed, and doctors are optimistic that she won’t require any further procedures, as reported by Mail Online.
Paisley’s mother shared a post on Facebook to raise awareness about BWS, stating that everything was going well until Paisley was born prematurely at 29 weeks. She recounted the chaos, fear, and unknowns that came with the situation, including the news that Paisley would have to be flown to Sioux Falls for medical attention without her. Despite the uncertainty, she held onto faith that she would soon be able to hold her daughter for the first time.
“I will forever remember the image of her being intubated, without hearing her cry and feeling scared for her. Everything was happening so quickly and nobody knew exactly what was happening,” her mother wrote in a Facebook post raising awareness about BWS.
Madison Kienow, Paisley’s mother, shared on Facebook that after three weeks in the hospital, they received the positive diagnosis of Beckwith-Wiedemann syndrome. She couldn’t believe what was happening to her innocent baby girl.
“With frequent scans, blood tests, regular sugar checks, oxygen, and multiple surgeries and therapy sessions, my daughter is still with us. We cherish every day we have her with us, living life to the fullest.”