Baby born with massive adult sized tongue finally able to smile
A baby born with a massive adult-sized tongue has finally been able to smile for the first time after life-changing surgery.
Paisley Morrison-Johnson, from Aberdeen in South Dakota, USA, had such a large tongue that she needed breathing apparatus for the first week of her life to stop her from choking to death.
She was born with Beckwith Wiedemann Syndrome (BWS) – an overgrowth disorder that affects one in every 11,000 births worldwide.
The rare condition caused the little girl’s tongue to grow more than twice the size of her mouth and it even shocked doctors, who said it was one of the largest tongues they had ever seen.
Until she was six months old, Paisley had to be fed via by a gastronomy-tube because she struggled to eat and wasn’t receiving the vital nutrients needed to keep her alive.
Concerned parents Madison Kienow, 21, and Shannon Morrison-Johnson, 23, hoped their daughter’s mouth would grow to accommodate her overgrown tongue – but it never did.
Even after surgery to slice parts of it away, her tongue continued to grow back and still hung out of her mouth.
Six months ago, Paisley had her second tongue reduction and has smiled for the first time after having a total of more than six inches of muscle removed.
Paisley, who is 16-months-old, is now enunciating the sounds that will allow her to speak her first words.
Mum-of-two Madison, a pre-medical student, said: “Her tongue filled up her whole mouth, it was very thick and protruding out of her mouth.
“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.
“When she was born, it was so enlarged that doctors worried it was going to affect her airways and cause her to suffocate.”
Paisley was incubated on a ventilator for her first three days and then given nasal oxygen – but by the time she was a week old she was breathing on her own.
Her mum added: “Doctors tried bottle feeding her but they couldn’t find any nipple that would help her because of her large tongue.
“She had to have a g-tube fitted because not enough food was getting into her stomach.
“Doctors told us she had one of the largest tongues they had ever seen and that the sooner she had reduction surgery the better.
“At six months old the surgeon removed two inches of her tongue.
“They cut the tongue through the middle and took cut portions out of the sides.
“But after her first surgery it looked like her tongue had grown back to its original size and was really bothering us.
“During her second reduction surgery a massive amount of her tongue was removed and thankfully now it goes completely into her mouth.
“Since recovering she smiled for the very first time, I couldn’t believe it and was shocked by how beautiful my little girl looked.
“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.”
Before having her reduction surgeries, Madison noticed that people would stare at her daughter because of her enlarged tongue – which is one of the main symptoms of BWS and medically known as macroglossia.
Other symptoms of the condition include: creases behind the ears, one side of the body being larger than the other and an above average birth weight.
Madison said: “Because her tongue protruded out of her mouth and constantly stuck out it always looked like she was making silly faces.
“Quite often, strangers would stare at her and some would make comments.
“They would always ask me why she looked so different and why she had such a huge tongue.”
Doctors hope that Paisley won’t need further tongue reduction surgery and are now monitoring for other risks associated to Beckwith Wiedemann Syndrome.
Children with the condition have a 7% to 25% of developing cancerous tumours and so Paisley will have ultrasounds and bloodwork every three months until she’s eight-years-old when the risk significantly drops.
Madison said: “Since her second surgery, her tongue hasn’t grown back as much and it isn’t affecting her eating or drinking out of a bottle which is great.
“She is still being monitored, every three months she has scans and blood samples taken to monitor for tumours, which is one of the cons of BWS.
“Despite this, she seems like a very happy baby and is being well taken care of, so we’re really confident about her future.”
Approximately 90 percent of children with BWS have an enlarged tongue, which can lead breathing, feeding and speech problems.
Tricia Surles, Co-Manager of support group How Big BWS, said: ‘Beckwith-Wiedmann Syndrome is a genetic overgrowth syndrome that typically affects a child’s organs including the tongue, kidneys and liver.
“Problems caused by macroglossia, an enlarged tongue, can be more severe and require immediate surgical intervention such as tracheotomy in order for the child to breath.
“While many children do not need any intervention, some will need speech therapy, tongue reduction surgery or jaw realignment.”