When Paisley Morrison Johnson was born with a large tongue, her parents feared she would never live a normal life. The little girl was unable to breathe or eat without medical assistance and couldn’t even close her mouth. But you won’t believe how she looks now.
The first year with their daughter hadn’t been easy. They wanted a child for so long but never imagined that when their dream finally came true, their lives would be filled with constant hospital appointments and endless worry. Everything rested on this operation, and Shannon and Madison didn’t know what to expect.
As they anxiously waited for the doctors to come out of the operating room, they couldn’t help but think of how they’d gotten there. When Shannon Morrison Johnson and Madison Kenow began trying for a baby, they imagined all the wonderful things that would come from being a family of three. They couldn’t wait to spend their days raising their child and living all the new adventures it would bring.
Everything with the pregnancy went smoothly, and the couple were overjoyed that they’d been fortunate enough to have such an easy time, letting them properly enjoy the journey. Nine months passed in a blur of thinking of baby names, decorating the nursery, and buying cute outfits. When Madison went into labor, the couple were more than ready to meet their daughter.
The delivery process was long and painful, but Shannon remained by Madison’s side throughout, and eventually, their little girl entered the world. The couple’s joy was short-lived, though. As soon as the midwife picked up their daughter, it was clear from the look on her face that something wasn’t right.
Rather than handing her straight to Madison, the little baby was whisked away, with doctors and nurses crowding around her. Madison was overcome with emotion and began to cry, asking what was wrong. Doctors had never been concerned about anything during the pregnancy, so why were they all gathered around her child now?
Madison and Shannon had only heard one weak cry come from their daughter, and now she’d gone quiet. Tears filled their eyes as all the worst scenarios began to race around their heads. After a few minutes, a nurse came over to the couple with a concerned look on her face.
She explained that the little girl had been born with an abnormally large tongue and was struggling to breathe. Doctors needed to find out what had caused the problem, so the little girl would need some tests. The nurse then asked the couple if they would like to hold their daughter for a few short moments before she was taken away for the test.
Shannon and Madison were in shock. Throughout the pregnancy, there had been no indication that anything like this would happen. They assumed they’d have a happy and healthy daughter. When the nurse placed the little girl in Madison’s arms, the couple looked down and were shocked by what they saw.
Little Paisley was tiny, yet she had an adult-sized tongue that hung out of her mouth. It was clear from listening to her that she was having a hard time breathing because of the obstruction her tongue was causing. Madison cradled her daughter as silent tears fell down her face.
It didn’t matter one bit to her what Paisley looked like, but her large tongue posed a serious risk to her health, and she couldn’t bear to think of what would happen if her little girl couldn’t breathe properly. The doctors allowed the couple to have some time with her; then, she was taken away so further examinations could be done.
The specialists were keen to see what had caused the little girl to be born with such a large tongue. But most importantly, they needed to come up with a plan to make sure she could eat and breathe properly. Hours passed in a state of confusion and sadness. The couple had spent so long thinking of the moment when their daughter would be born, and it had never crossed their minds that it would turn out like this.
Time seemed to stretch on forever while they waited for answers. They desperately wanted Paisley to be okay, but when they saw a doctor coming over to them, they couldn’t help but expect bad news. The couple were told that Paisley had been put on breathing apparatus. She had continued to struggle during the examinations, and the doctors had become increasingly concerned that she would suffocate due to her large tongue.
As a precaution, everyone had thought it was best to take some of the struggle away from the little girl. The couple couldn’t hide the sadness that they felt over a machine now having to breathe for their daughter. The bad news wasn’t over, though.
The doctor explained that he was certain that Paisley had a form of Beckwith-Wiedemann syndrome or BWS. The syndrome manifests with oversized organs and body parts, and Paisley’s large tongue was one of the most unusual cases that doctors had come across. They told the couple that her tongue was twice the size of her mouth.
Babies with BWS are usually born bigger than average, but Paisley was very small. It would seem only her tongue had been affected. The condition was rare, affecting only one in every 14,000 births worldwide. A plan now needed to be put in place to ensure Paisley could breathe and eat without assistance.
Paisley was brought back to the couple with her tiny body hooked up to the breathing apparatus. As the little girl lay still, her huge tongue seemed to almost take over her delicate face. Madison was concerned about how she would feed the little girl. Doctors believed that bottle feeding was the best option, as a range of different sizes of bottle teats could be tried out to find the best one to help Paisley eat.
But no matter what they tried, nothing was suitable. Paisley’s tongue was making it impossible for her to feed. It was just another blow for the couple. With no bottle proving right, doctors were left with no choice but to insert a feeding tube into the little girl’s body to ensure she got the nourishment she desperately needed.
It was now clear that Paisley couldn’t breathe or eat without medical intervention and that something would have to be done soon to ensure she had a healthy future. Weeks passed, and the only solution that doctors could come up with was to reduce the size of Paisley’s tongue via an operation.
Madison and Shannon supported the decision, hopeful that it would give their daughter a chance at a normal life. The little girl couldn’t even close her mouth, as her tongue permanently hung out of it and completely altered her appearance. Aside from the huge medical concerns that went alongside Paisley’s large tongue, the couple knew that their daughter would never be treated normally while she looked the way she did.
However, doctors didn’t want to perform the surgery on the little girl until she was at least 6 months old. They needed to be sure that her little body would survive the anesthetic and the replacement of such a delicate organ. Forced to wait until the time came, Madison and Shannon felt like they were constantly on high alert.
They felt that, rather than enjoying the time with their daughter, they were constantly on edge in case Paisley stopped breathing. All the adventures they had planned as a family of three now seemed like a distant memory. Their lives were ruled by hospital appointments and a constant fear that they’d lose their daughter.
The permanent state of worry began to take its toll on Madison and Shannon. The surgery that was scheduled for when Paisley was 6 months old was the only glimmer of hope they had. But life hadn’t finished testing this family just yet.
On the day of Paisley’s surgery, the couple was feeling a mixture of emotions. They were relieved that their daughter might now be able to live a normal life where she could eat and breathe unassisted. But the thought of her having surgery also filled them with fear.
Doctors told the couple that they planned to reduce Paisley’s tongue by around 5 cm, as they hoped it would be enough to finally let the little girl close her mouth. Shannon and Madison kissed their daughter goodbye; she was taken away for her surgery. All they could do now was wait, and wait they did, trying to lift each other up by sharing the few happy memories they had with their precious little girl.
After waiting hours to hear some news, a nurse came to collect the couple and said they could now see their daughter. As the couple walked down the long hospital corridor, a thought occurred to Madison. She’d expected to be told that Paisley’s surgery had gone to plan, but so far, no one had said anything.
Madison wondered if she was reading too much into the situation or if the silence meant that they should prepare themselves for more bad news. When they entered the room where their daughter was, a surgeon was waiting for them. One look at little Paisley told them all they needed to know: the surgery hadn’t been a success.
It was all too much for Madison to take in, and she broke down in tears at her daughter’s bedside. The 5 cm reduction hadn’t been enough. The doctor explained that Paisley’s tongue was so large that the operation hadn’t given them the results they’d hoped for. Her tongue was still too big, and even though her parents could see a slight difference in size, it still hung out of her mouth.
The surgery hadn’t really fixed the breathing and eating issues that the family had battled through for the past 6 months. The couple now felt like they’d hit a dead end. How would Paisley ever have a normal life? The doctors told the couple they would explore more avenues to give Paisley a normal life and left them there to watch over their daughter as she slept.
She was the most beautiful thing they’d ever laid eyes on, but she was so fragile. They weren’t sure they would ever see her grow up. But a glimmer of hope presented itself a few weeks later when the hospital contacted Shannon and Madison. They believed a second surgery could be carried out, where more muscle and tissue would be removed.
The only downside was that the family would have to wait another 6 months. By now, the couple had almost got used to living life on high alert. But in the rare quiet moments, they couldn’t help but think about all the early memories they hadn’t made with their daughter. Their lives had revolved around hospital appointments and ensuring their daughter survived, so there had been little time for anything else.
As Paisley was getting older, the couple became more aware of all the other things she wouldn’t be able to do if the second round of surgery wasn’t a success. The little girl hadn’t even been able to smile yet, and if the surgery failed again, then her speech would also be impacted.
Six months later, the couple found themselves back in a familiar situation. They’d just said goodbye to their daughter as she went for her second surgery. Doctors planned to massively reduce the size of Paisley’s tongue this time around and were confident that they’d get much better results.
When a nurse came to collect Madison and Shannon, everything felt different. She had a smile on her face as she told them they could go through and see their daughter. Shannon and Madison didn’t want to get their hopes up again, but a little part of them dared to dream that the surgery had worked.
When they stepped into Paisley’s hospital room, they immediately rushed over to the little girl’s bed. She was now 1 year old, and although she had spent most of her life surrounded by some kind of hospital equipment, it never got any easier for her parents to see. Shannon and Madison held each other’s hand as they looked down at their daughter.
Once again, Madison broke down in tears, but this time Shannon couldn’t hide his emotion either. Paisley had her mouth closed for the first time in her life. She looked like a completely different child without a huge tongue taking over her face. Her parents could finally see her beautiful features in a way they’d never seen them before.
The surgery had been a success. Fifteen centimeters of muscle and tissue had been cut away this time, and alongside the fact that Paisley’s tongue now properly fit inside her mouth, the little girl could also eat and breathe effortlessly. The couple cried tears of joy that their daughter would now be able to live a normal life.
Paisley would soon have an extra special surprise for them too. When the effects of the anesthetic began to wear off, it became clear how much the surgery had changed her. Her face came alive in a way it hadn’t been able to before. For the first time ever, a huge smile broke out on the little girl’s face.
That’s when the couple knew everything would finally be all right. Although Paisley’s BWS presented other problems, such as a heightened risk of tumors, meaning she would have to have regular checkups until she was 8, the couple now felt confident that they could tackle anything as a family.
With Paisley’s big, beautiful grin to get them through, they were ready to finally start living as a family of three.
