Neurogenic bladder and bowel
Although you'd never know it by his sweet disposition, Brandon has been a patient in HSHS St. John's Children's Hospital many times over the past 12 years. Born with anal stenosis, Brandon underwent his first surgery when he was just 10 days old. Since that time he has since had multiple surgeries, outpatient procedures and received pediatric rehabilitation services.
“Brandon wasn’t expected to walk or talk, but he overcame those odds,” his mother Angie explains. “Today he runs around just like a normal kid.” Brandon enjoys swimming, baseball and his favorite, basketball.
Brandon and Angie are very thankful for the outstanding care they receive close to home. “I know how difficult it can be when you must travel a long distance to receive care. We are fortunate to have such a great network of doctors and nurses at St. John’s Children’s Hospital.”
Brenna was born in 2012 with a rare genetic skin condition called Harlequin Ichthyosis. This incurable condition causes her skin to grow 10 times faster than usual. Brenna’s mom, Courtney, explains, “Many babies with Brenna’s condition die within hours or days of birth. We have no doubt that the amazing care provided at St. John’s is what kept her alive during that critical time.”
Brenna takes an hour-long bath every day and must be covered with a thick lotion to keep her skin comfortable and healthy. She has a voracious appetite, but is very tiny because her rapid skin growth consumes many calories.
Brenna loves Minnie Mouse, playing pretend with her brother, Connor, visits to the library and pizza. When people ask about Brenna’s skin, Courtney shares her story. “It is important to help kids celebrate their unique differences which we all have. What makes us the same is our humanity.”
Torina Fenderson son, Caden, was born at 23 weeks gestation, or four months early. Weighing just 1 pound, 5 ounces Caden required the highest level of care. Torina recalls wondering if he would survive and how hard it was to juggle being a mother to her two older children while Caden was in the NICU during the first three months of his life.
Now 6 years old, Caden is doing better than expected and he loves to sing along to Bruno Mars during his pediatric therapy sessions and sports. Torina credits the doctors and nurses at St. John’s NICU for his survival. “Without their wonderful staff, my baby boy may not have had a chance.”
Considered a micropreemie, Calvin McLeod was born 17 weeks early weighed only 1 pound, 4 ounces at birth. He spent the first two months of his life on a ventilator in St. John’s NICU.
Calvin and his identical twin brother, Cobe, were born 17 weeks early because of twin to twin transfusion – a condition that develops when one twin starts to take fluid from the other. Cobe did not survive. Calvin was born with a small hole in his heart, could not breathe on his own and his immature body organs struggled to function properly.
Calvin’s parents credit St. John’s NICU staff, a strong support system and the power of prayer for Calvin’s positive outcome. Today he loves bath time, being outside and watching football with his dad.
Problems at birth
Jaxon Gemberling, known as Jax, was born on May 12, 2015 at St. John’s Hospital. Many of Jax’s medical problems were discovered in utero. The doctors were not sure he would make it to delivery. Jax was born with an enlarged heart and severe scoliosis and is missing part of his brain. He requires a g-tube for feeding. He spent the first 56 days of his life in the NICU.
About six weeks after Jax was home, he came down with three viruses, which landed him in the Pediatric Intensive Care Unit (PICU). Shortly after Jax returned home, he went into cardiac arrest. He was rushed to St. John’s Children’s Hospital where the Pediatric ER Team resuscitated him.
Throughout this time his family and caregivers were trying to get his weight up so he could undergo heart surgery. On November 2, Jax and his parents, Ann and Jay, traveled to St. Louis for his heart surgery. Although he still has a long road ahead of him, Jax has come a long way already. Ann says, “He is a fighter.”
Arriving at 25 weeks gestation, Kaydence must have known she had important work to do in this world and was eager to get started.
Weighing just 1 pound, 15 ounces, Kaydence’s future was uncertain from the beginning. Her fighting spirit got her through many battles in the first few months of her life including infection, a grade 3 brain bleed, a hole in her heart and lung disease. She was three weeks old when her parents got to hold her for the first time. After four surgeries and almost four months in the NICU, Kaydence was able to go home.
Today Kaydence is singing, playing with her dolls, dressing up and dancing. She loves cottage cheese and shopping with mom. To show their appreciation, Kaydence and her family have given back by sharing her story to inspire others to raise funds for St. John’s Children’s Hospital.
When ruptured appendicitis spread infection throughout her entire body, seven-year-old Taryn Clarke was not expected to survive. Her Mom, Alicia Clarke, recalls looking at her lifeless body and asking doctors if she was going to live.
“Taryn was not improving,” said Alicia, “so doctors had to make the hard decision to do surgery that would either save her life or take it.” Miraculously, Taryn survived and is an energetic, happy, outgoing little girl who loves cheerleading, gymnastics, hip-hop dancing and animals. “Although Taryn still has days that she is sick, she does not let that get her down,” Alicia said. “She always says I’m bigger and stronger!”
Taryn and her family spend a lot of time sharing her story and raising money for other kids at St. John’s Children’s Hospital.