A woman blamed herself and got emotional after birthing a baby with a life-threatening adult-sized tongue. She opened up about the difficult process of helping her baby get back to a healthy life. The baby girl finally showed her adorable smile six months after birth.
Paisley Morrison-Johnson was born with a tongue the size of an adult. The tongue worried doctors, who felt it would suffocate her. Despite such a daunting start to life, Paisley got the medical help she needed six months after birth and can now live a normal life.
During her ultrasound, Madison Kienow, Paisley’s mother, counted her baby girl’s toes, fingers, ears, and eyes. And when she saw her tongue, she joked:
“Oh cute, she likes sticking her tongue out.”
Madison soon gave birth via Cesarean section, and doctors immediately knew something was wrong. The little girl’s tongue was so large that it completely filled her oral cavity. Doctors quickly hooked the baby up to a ventilator to ensure she could breathe.
Baby born with adult-sized tongue smiles after life-changing surgery https://t.co/gZSsc3j4D8
— The Telegraph (@Telegraph) October 13, 2016
Madison, who was being stitched up, did not hold her baby when she was born. She remembered the experience:
“It was a really emotional (sic). It’s still emotional. 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.”
Surgeons also told the new parent that her baby’s tongue was the largest they had ever seen, especially for an infant. Soon, specialists began to learn more about why Paisley had an adult-sized tongue, and they soon found out the cause.
What Happened to Baby Paisley’?
Paisley was flown to a specialist in Sioux Falls when Aberdeen, South Dakota, doctors couldn’t figure out what caused her adult-sized tongue. There, Madison met a team of specialists who couldn’t determine what conditions were affecting her daughter, and she became discouraged.
However, soon after, doctors diagnosed Paisley with Beckwith-Wiedemann Syndrome. Madison said she was devastated:
“I was blaming it on me. What did I do during my pregnancy that was wrong? But it was nothing that I could have prevented. It was just what she was born with. Jesus wanted me to have something a little extra special.”
Beckwith-Wiedemann syndrome (BWS) or macroglossia is a genetic condition that causes abnormal growth in specific parts of a person’s body. It is a rare genetic condition that affects one in 13,700 newborns worldwide. Other symptoms of the condition are having one side of the body bigger than the other, creasing behind the ears, and an above-average birth weight.
Tricia Surles said Paisley’s condition could’ve been more severe requiring immediate surgery like tracheotomy to help the child to breathe. The co-manager of the How Big BWS support group noted that other children didn’t need interventions while others required surgery, speech therapy, or jaw realignment.
Immediately after Madison learned of her daughter’s condition; she consulted with specialists to see what could be done. Three months later, specialists conducted surgery to reduce the size of her baby’s tongue, with a follow-up surgery to reduce her tongue size further, enabling her to finally close her mouth.
Madison said she would never forget the look of satisfaction on the surgeon’s face when he walked into the recovery room. The surgeon said:
“Wow, that was quite the surgery!”
The tongue is a muscular organ that can grow back, meaning Paisley’s tongue could become a larger-than-normal size again. However, specialists noted that the growth disorder generally slows as children age, but most grow to have healthy lives.
Before her daughter had her surgeries, Madison noticed people staring at the little girl and making comments. Some were even brave enough to ask the parent why Paisley had such a big tongue. Ever since the little girl had her second surgery, her tongue hasn’t started growing as much as before.
How Does the Baby Look after the Surgeries?
Before her surgeries, Madison said her baby’s tongue was constantly sticking out. Paisley would always be chewing her tongue because it took up so much room in her mouth. “It always looked like she was making silly faces,” Madison added.
After her surgeries, Madison couldn’t believe how beautiful her daughter looked. She was shocked by the immense change and revealed that Paisley smiled for the very first time after recovering from the surgeries, adding:
“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.”
Madison also said Paisley’s life improved so much since the surgeries, and she no longer had to worry about her baby choking. As a toddler, she was now able to drink from a bottle with ease.
The little girl could also speak easily and started saying her first words; she began eating adult food, her teeth also began growing, and she took her first steps. Her mother describes her as a “happy baby” who has the best care and her parents are confident about her future.
When Paisley turned 16 months, her mother said her daughter had become “one of the most facial expressed babies ever.” Madison added:
“She is growing up, and she has so much spunk and personality and love. She’s just amazing.”
Baby girl born with huge adult-sized tongue smiles for first time after surgery https://t.co/pOmEbsQ3dn pic.twitter.com/RkWVoTVqe5
— The Mirror (@DailyMirror) October 13, 2016
Doctors said Madison’s baby girl would be monitored every three months until she turned eight when her chances of developing cancerous tumors triggered by the syndrome would drop dramatically. Children who also had the same condition sadly have a seven to 25% chance of developing cancerous tumors.
However, her mother was optimistic that her daughter would grow normally. She said Paisley was a determined girl who had a lot of fight in her.
