A baby born with an enormous tongue is finally living a more normal life after undergoing two surgical procedures for this rare condition.
Not long after birth, Paisley Morrison-Johnson was diagnosed with Beckwith Wiedemann syndrome (BWS). This is a rare overgrowth disorder that affects about one in every 14,000 births globally. In Paisley’s case it resulted in her tongue growing to be more than twice the size of her mouth, making it difficult to feed and putting her at risk of choking to death.
Baby Born With Enormous Tongue Can Finally Smile After Two Surgeries
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As a result of her condition, Paisley had to be fed through a tube for about six months, while doctors worked to figure out the best course of treatment. Parents, Madison Kienow, 21, and Shannon Morrison-Johnson, 23, eventually agreed to surgery to cut part of the tongue away. However the baby’s tongue continued to grow back, and still hung out of her mouth and endangered her life.
Six months ago, Paisley had her second tongue reduction and was able to smile for the first time after having a massive six inches of muscle removed. Now 16-months-old, Paisley is beginning to make noises and will soon be speaking her first words.
Baby Born With Enormous Tongue Can Finally Smile After Two Surgeries
“Her tongue filled up her whole mouth, it was very thick and protruding out of her mouth,” said Ms Kienow.
“It looked she had an adult’s size tongue inside the mouth of a baby.”
“Her tongue was constantly sticking out, she was always chewing on her tongue because it took up so much room in her mouth.”
Ms Kienow also talked about how it was when Paisley was born, noting that doctors told her Paisley had “one of the largest tongues they had ever seen” and that they were worried it was going to “cause her to suffocate”.
Both Paisley’s parents are thrilled with the results of the surgery, and their baby daughter’s new lease on life.
“Since recovering she smiled for the very first time,” said her mum. “I couldn’t believe it and was shocked by how beautiful my little girl looked.”
“She’s like a completely new baby… 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 will not need any other surgery now, but they continue to monitor her for other risks associated with Beckwith Wiedemann syndrome. The condition also results in creases behind the ears, largeness on one side of the body, and a higher-than-average birth weight. More seriously, children with BWS have a 7-25% chance of developing cancerous tumours. Paisley will be having ultrasounds and blood tests every three months until the age of eight, after which her risk drops markedly.
The enlarged tongue is present in approximately 90% of BSW cases, but not all children need surgery to correct it.
