The birth of a baby should be one of the most joyous events in any mom or dad’s life. But in 2015, Madison Kino and her partner Shannon Morrison Johnson, were immediately faced with alarm and fear at their daughter’s arrival. Even the South Dakota delivery doctors were reacted with shock at the newborn’s appearance.
The then 29 year old Keenau and Morris Johnson, 23, lived in the small city of Aberdeen, SD, and were very much looking forward to welcoming a new face. In June 2015, at seven months pregnant, Key now underwent a cesarean section at the Stanford Aberdeen Medical Center to deliver baby daughter Paisley Fey. However, that rapturous moment of joy came to an abrupt end when it became clear something was seriously wrong.
Prior to Paisley’s birth, Key now had undergone two ultrasounds, each time noting her daughter’s seemingly normal features. Nevertheless, there was one thing that stood out. Literally. The medical student spoke to CBS News in October 2016 and remembered thinking of her baby. Oh, cute.
She likes sticking her tongue out. However, following the Csection procedure, Paisley was immediately put on a ventilator precisely for this reason. The sheer size of her overdeveloped tongue was putting the little mite in huge danger. The muscular organ was twice the size of the baby’s mouth and was hampering her ability to breathe. Unsurprisingly.
Manufacturing technician dad Morris Johnson and Keena were utterly distraught in the chaotic minutes after Paisley’s birth. Indeed, it was a traumatic time that the mom remembers only too well. It was really emotional, Keynote told CBS News. It’s still emotional. I never got to touch her.
I got to see her. But I was being stitched up and they just wheeled an omnibat over to me and then I saw her, you know, just tubes and cords. Furthermore, the worried Aberdeen doctors did not know what Paisley’s problem was. The baby’s tongue was so massive it was impossible for her to feed. Consequently, a tube was fitted so that she could receive milk directly into her tiny tummy.
Three days after her birth, Paisley was transferred 200 miles away to specialists at the Stanford University of South Dakota Medical Center in UFO’s. Despite this move, however, the baby’s condition remained a mystery, leaving Kenow and family crestfallen. But despite this and the fact that Paisley was still in neonatal intensive care, there were still some encouraging signs. One week on from the cesarean, a baby girl began to breathe on her own. And a few weeks later, Keanu and Moores Johnson finally got some answers.
Specialists diagnosed their daughter with Beckwith Weedoman syndrome, a mercifully rare genetic condition. Beckwith Weedoman syndrome is an overgrowth disorder seen in premature babies. Thankfully, only about one in every one 40 births worldwide are affected. Symptoms of the syndrome normally include an oversized tongue liver tumors, enlarged abdominal organs, which can include heart defects and excessive development for one half of an affected baby’s body. Under the circumstances, it would appear that Paisley had got off lightly.
Nevertheless, her mom felt guilty. I was blaming it on me, he now admitted to CBS News. 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. But if Paisley’s problems seemed largely cosmetic, it was still a huge worry for Keno and Moores Johnson. Her tongue filled up her whole mouth, Kino told UK tabloid the Daily Mail in October 2016. It was very thick and protruding out of her mouth. It looked like she had an adult sized tongue inside the mouth of a baby, the mom continued.
Her tongue was constantly sticking out. She was always chewing on her tongue because it took up so much room in her mouth. Paisley’s parents were told that there was really only one option. As Keeno explained, doctors worried it was going to affect her Airways and cause her to suffocate. They told us she had one of the largest tongues they had ever seen and that the sooner she had a reduction surgery, the better.
With this in mind, Paisley underwent reduction surgery at six months old, with doctors removing two inches of her tongue. The procedure saw them cut through the middle of the muscular organ before removing slices from around the edges. Speaking to CBS News, Keenow remembered seeing the surgeon immediately after the operation. Apparently, he told her, wow, that was quite the surgery. Sadly, this was not an end to the matter.
Paisley’s tongue started to grow back soon after the procedure, which led to a second date with a knife. Four months on following that, doctors were more confident that the growing infant would not need such radical surgery again because the symptoms of Beckwith white men lessened with age. Meanwhile, Keyneau and Morris Johnson were loving the new look Paisley. Indeed, they had noted an immediate change in their daughter’s appearance since recovering. She smiled for the very first time, the thankful keynote told the Daily Mail.
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. And it wasn’t just Paisley’s appearance and appetite that was thrilling. Keeno and Morris Johnson.
She’s even getting close to saying her first words, the mom went on. 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. Nevertheless, although the reduction surgeries eventually proved successful, the continued risks of Beckwithvitamin syndrome were still present. This meant that Paisley was still being monitored by her doctors. Indeed, the Infinite Tens hospital for an ultrasound and blood test every three months, but the schedule is set to end when she reaches her 8th birthday.
It is true to say that as Beck with wedding and sufferers grow older, the risks associated with the condition receive considerably. Experts suggest that most go on to lead perfectly normal adult lives, but there is still a seven to 25% chance for children with a syndrome to develop cancerous tumors. So Paisley will be closely attended to by our medical team. But the oral problem in more severe cases should not be overlooked. Tricia Searles, a manager with A-U-S.
Bank with Wedding and Syndrome support group, was quoted in the Daily Mail article. Problems caused by macroglossia an enlarged tongue can be more severe and require immediate surgical interventions such as tracheotomy in order for the child to breathe, she explained. While many children do not need any intervention, some will need speech therapy, tongue reduction surgery or jaw realignment. But as for Quinoa and Morris Johnson, they were delighted with their daughter’s progress and they praised Paisley’s herself in the months following her dramatic birth. She’s one determined little girl, her proud mom told CBS News.
She has a lot of fight in her. However, Paisley’s parents also deserved praise. They had faced a massive trauma in the immediate aftermath of their daughter’s birth and months of fear and worry. Thankfully, due to the skill and expertise of medical specialists, Keena, Morris Johnson and baby Paisley can all now smile and look forward to life together.