Children's Miracle Network Hospitals is proud of every child that fights through adversity to live. Below are some courageous kids who are truly heroes. They fought their battles locally at Wolfson Children's Hospital and UF Health Jacksonville.
Mike and Meme were looking forward to their fourth baby boy. During a routine 5 month check up at the OB-GYN, Baby Ben’s ultrasound showed a fairly common form of congenital heart disease. Mike and Meme were sent directly to Pediatric Cardiology at Wolfson Children’s Hospital where Dr. Stephanie Lacey confirmed the diagnosis.
With close follow up, Dr. Lacey began to realize that his heart defect was not as ordinary as first anticipated. Ben was closing the communication in his heart that would allow the oxygenated blood to travel to his brain and other vital organs after he was born. His mother provided the needed oxygen while he was inside the womb but after he was born, Ben would suddenly not be able to circulate any oxygenated blood. No infant with this specific defect had ever survived past a few minutes.
Not accepting that fate for Ben, Dr. Lacey came up with a plan and organized a massive support team that would immediately take over once he was born. In fact, his birth was going to make history! This would be the first time a baby would be born in the Wolfson Children’s Hospital operating room.
On the day of delivery, one minute after birth, Ben’s heart rate slowed to the point that he required CPR. Within 15 minutes, he was placed on extracorporeal membrane oxygenation (ECMO) machine that would take the blood out of his body, oxygenate it and then replace it. Meanwhile, surgeons prepared Ben for a life-saving operation. They would create a hole between the two top chambers allowing oxygenated blood to temporarily reach his brain.
After this procedure, Baby Ben spent three more days on the ECMO machine. When he was two week old, he had the definitive surgery to fix his heart. Ben spent several more weeks in the hospital but is now home with Mike, Meme and his three older brothers growing and thriving well.
Celeste was born unresponsive and not breathing in 2012. After being resuscitated, a doctor in the NICU at a local hospital recommended Celeste receive a new cooling treatment available at UF Health Jacksonville. Purchased that same year by CMN Hospital funds, this cooling cap would limit and heal any brain damage that may have occurred during her birth. During her transport, a team of miracle-working respiratory therapists and nurses were able to begin the cooling process. For three days, Celeste’s body temperature was kept in a hypothermic state of 91.5 degrees.
After three days of cooling, Celeste began to awaken from high doses of medications, and her parents were finally able to hold their little miracle. Despite an MRI with a bleak prognosis, they brought Celeste home grateful for the miracles they had already seen in her short life and hopeful to see her overcome the odds.
After being discharged from UF Health Jacksonville, Celeste continued to receive expert care from doctors at the University Of Florida Department Of Childhood Development, Nemours, and Wolfson Children’s Hospital. Celeste doesn’t take one day of her miracle life for granted. She fills every day with zeal as she explores and discovers the world around her.
John and Georgi were looking forward to the birth of their second child. In September 2005 at 13 weeks gestation Baby Elijah was diagnosed with a rare and fatal fetal condition called Lower Urinary Tract Obstruction. He was unable to urinate while in the womb due to an obstruction in his urethra which can create a multitude of cascading issues. Elijah was given a 10% chance of survival and told he would likely die before birth.
Determined to fight for their son’s life, John and Georgi researched a minimally invasive fetal surgery performed in the womb that could remove the obstruction. Before fetal surgery could be considered, Baby Elijah would have to undergo genetic and kidney function testing. Still having to wait because fetal surgery could not be performed until 16 weeks gestation, his parents prayed he would survive.
At 16 weeks gestation, fetal surgery was performed to remove the blockage in his urethra and a pigtail shunt was added in his bladder. However, Baby Elijah’s battle was not over and at 36 weeks gestation, Elijah’s mother had to have an emergency c-section at The Women’s Pavilion at Baptist Medical Center Downtown due to dangerously low amniotic fluid. Once again, his life was at risk.
Baby Elijah was immediately admitted to Wolfson Children’s Hospital Neonatal Intensive Care Unit (NICU) where he was diagnosed with a rare genetic syndrome called Eagle-Barrett Syndrome (a/k/a Prune Belly Syndrome) that affects 1 out of every 40,000 live births. This was the cause of his fetal lower urinary tract obstruction.
Elijah was born with severe urological issues including undescended testes, bi-lateral grade V kidney reflux, hydronephrosis, hydroureter, kidney disease as well as missing abdominal muscles and intestinal malrotation. He has had numerous surgeries at Wolfson Children’s Hospital since his birth and takes a daily medication to prevent life-threatening urinary tract infections and to keep his bowels functioning properly.
John and Georgi cannot say enough about all the medical staff at Wolfson Children’s Hospital and are extremely grateful to all of Elijah’s caregivers for giving him a greater quality of life!
On January 4th, 2012, Ellie was walking to school with her mom and brothers when suddenly she began having problems putting one foot in front of the other. Feeling as if she had no feet, Ellie fell to the ground and was unable to get back up. She was taken to the hospital and immediately given a Cat Scan.
Doctors informed Ellie’s parents that she had a tumor on her brain. An MRI confirmed that the tumor was large and that there was a lot of excess fluid. Wolfson Children’s Hospital doctors performed her first surgery right away to put in an external drain and cut out 5% of the tumor. Three days later a second surgery was performed to put in a VP shunt.
Ellie has had a difficult road to recovery. Her shunt has failed nurmerous times leading to additional surgeries and complications. Further MRIs showed tumors on her spine. After suffering a seizure that stopped her heart for 21 seconds, doctors decided that her shunt had once again failed and two shunts were needed to get Ellie back on the right track.
Since her first surgery, Ellie has learned to walk again. She has completed her bi-weekly chemotherapy treatments and will have MRIs to monitor for growth. Through all of her ordeal, she remains an upbeat patient who waves “hello” to everyone she meets, loves Tinkerbell and dances as much as she can!
At age eight, Haley began experiencing unexplained knee pain. It got so bad that her grandparents picked her up early from school to take her to a nearby clinic. MRI results revealed a tumor in her right femur. Haley was diagnosed with Osteosarcoma, the most common form of bone cancer found in children. She was transported to Wolfson Children’s Hospital for treatment.
Before her diagnosis, Haley loved to participate in cheerleading and gymnastics. Facing a possible amputation, the family was worried about their daughter’s future - both physically and mentally.
Thanks to new technology, Haley was able to avoid amputation but surgeons had to remove part of the bone in her right thigh. She received an implant that connects the remaining part of her femur to the lower part of her leg and features a hinge joint to replace her knee. For added ease and to avoid additional surgeries, the device grows with Haley until she receive a permanent knew replacement as an adult.
After completing thirty weeks of chemotherapy appointments at Wolfson Children’s Hospital, Haley is now cancer free. While she recognizes that life might have a few more challenges, she faces every hurtle with optimism and strength.
When Jennifer and Dave were thrilled when they discovered they were having twins! However their happiness was cut short when, at 16 weeks pregnant, they learned one of the twins had no amniotic fluid and should prepare for the worst. Since his water had ruptured and he was at a high risk for infection, Baby Jack would not be able to fully develop in the womb.
By 19 weeks, Jennifer started having contractions. At 22 weeks, she was admitted into the hospital, where she and the babies were checked on every 4 hours. Her new goal was to make it to 24 weeks. At that point Baby Luke would have a 50/50 chance of survival while Baby Jack would never take a breath. Jennifer made it 8 more weeks.
On September 7, 2007, at Wolfson Children’s Hospital, Jack and Luke were born weighing 2 lbs 11 ounces and 2 lbs 13 ounces, respectively. Immediately they were placed in the NICU transporter, purchased through Children’s Miracle Network Hospital funds. Both babies were extremely sick, not responding well to treatment, and maxed out on their medications. Luke made a turnaround on day 2, and Jack soon followed. Lisa Lammons, Nurse Manager at Wolfson Children’s Hospital NICU said the twins “made the most remarkable turnaround” Medical staff told the family that they had never seen a baby survive without having the amniotic fluid.
After 7 weeks and 5 days in the NICU, the Jennifer and Dave were able to take baby Luke home. Jack left the hospital just one week later. Today, the boys are about to start second grade and love Mario Brothers, swimming and pancakes!
Jaiden weighed 10 pounds 7 ounces when he was born in September of 2008. His journey began with respiratory issues at three months old when he was diagnosed with GERD and asthma. He had extreme difficulties breathing while sleeping and often went into respiratory distress. Doctors discovered that Jaiden also had a significant heart murmur and had a small hole in his heart that caused his heart rate to drop to alarming rates. For the first three years of his life, Jaiden required a heart and apnea monitor every night while he slept.
In the middle of the night on July 12, 2010, Jaiden went into respiratory distress and was in respiratory failure by the time the ambulance arrived. After much praying and further testing, doctors treated Jaiden for an airway obstruction and sleep apnea. In October of that year, he had surgery at Wolfson’s Children’s Hospital to remove the airway obstruction. A later surgery removed his tonsils and adenoids.
Jaiden suffers from a number of other severe conditions that affect his ability to digest food properly, sleep through the night and fight off infections. He attends speech and feeding therapy as well as eats a restricted diet. All these illnesses require him to constantly be on steroids and antibiotics.
In January of 2012, Jaiden was cleared from cardiology as the hole in his heart finally closed on his own and was able to sustain a strong regular heartbeat. While his respiratory functions also improved, more digestive issues began to surface. As he began to eat more solid foods, his body had a difficult time adjusting to the new diet. He also began having trouble walking and had weak muscles in his lower extremities.
Jaiden wears braces on his feet and ankles and undergoes physical therapy to strengthen the muscles. His doctors agree that neurological testing for a muscular disorder is needed and may explain his trouble walking and the issues involving his stomach and larger organs.
Training for an upcoming 5k, 14 year old Jake and his uncle, Kenny, ran the same route every day at the same time. They never expected to be struck by a drunk driver that would drag Jake 186 feet down the highway.
While Kenny suffered a broken shoulder, leg, arm and rib, Jake’s injuries were much more severe. The rescue team arrived and began to stabilize Jake before he could be life-flighted to area’s best trauma center, UF Health Jacksonville. He was rushed to surgery where pediatric trauma surgeon, Dr. Tepas, and his team removed his spleen to stop the internal bleed. Jake was moved to the Pediatric Intensive Care Unit (PICU), where he stayed for the next two months.
During his time in the PICU, Jake was unable to breathe and function on his own. He received chest, stomach and feeding tubes. He had 5 cracked ribs, 3 facial fractures, bruised kidney and lung, over 100 staples and stitches in his head and abdomen, dislocated shoulder, 3 blood clots on his brain, brain swelling, acute respiratory distress syndrome, road rash over most of his body and two missing teeth. He had two complete blood transfusions while at the hospital.
To manage the pain and keep him from pulling out any of his tubes, Jake was put in a medically induced coma. He developed several infections, including an infection in his blood stream and lungs. Each time this delayed him coming off the respirator. After 34 days and 2 unsuccessful attempts to breathe on his own, Jake was finally able to come off the respirator.
After his release from UF Health Jacksonville, Jake was sent to Brooks Rehab where he learned how to feed and dress himself again with little assistance. Still very weak, he could not do many things that others take for granted every day.
While the road to recovery is an uphill battle, Jake improves every day and was honored at CMN Hospitals’ Medicine & Miracles event in 2013 with the Jacksonville Jaguars.
On the last day of 2010, Luke’s family was enjoying a relaxing drive around town talking about the upcoming Holiday weekend and their plans to get back to a normal routine after Christmas break. Luke’s mom glanced in the back seat expecting to see her smiling children but realized almost immediately that something was wrong. Luke was suddenly nonresponsive. He was not moving, blinking or talking.
Swiftly pulling over the car, Luke’s father flagged down a nearby police officer while Luke’s mother called 911. She remembers the officer tell the operate “I have a 4 or 5 year old male who is breathing, has a pulse and is having a seizure.”
Luke was quickly transported and then admitted to Wolfson Children’s Hospital. He was immediately given a CT scan and spinal tap. His initial diagnosis was that he suffered a 30 minute seizure from an unknown origin. Throughout his 140 day stay in Wolfson, Luke lost all function-breathing, eating, and moving. To determine a cause and hopefully find a solution, doctors performed multiple MRIs, EEGs and spinal taps.
Luke’s final diagnosis is unusual and complex Encephalitis -- swelling of the brain possible. Doctors are still searching for a cause.
After a few setbacks and rough days, Luke is on his way to recovery. He lost the ability to move the left side of his body and regularly goes to physical and speech therapy to improve his motor skills and daily function.
Trent was born on February 4th, 2010 with a bilateral cleft lip and small opening in his soft palate that went undetected during pregnancy. Immediately after his birth, he was placed in intensive care. During the days that followed, Trent’s parents met with numerous doctors, counselors and nurses. They eventually found a surgeon at UF Health Jacksonville, Dr. Barry Steinberg, who performed Trent’s first surgery to repair his lip when he was only three months old. While the surgery was successful, it was also very difficult.
A year later, Trent had surgery on his soft palette. At this time his father had been deployed to Iraq. The second surgery was much more intense than the first. Trent was placed again in intensive care and was in so much pain that he could not sleep. The nurse asked Trent’s mother if they wanted to go to the Castle Room down the hall to calm him down. The nurse hooked Trent’s IV to a portable device that his mother could hold while Trent played. They spent eight hours in that room the first night.
In the near future Trent will need another surgery on his throat and possibly a bone graph to fix a spot in his upper gum. Trent’s parents are thankful to CMN Hospitals for donating the best equipment to aid in Trent’s procedures and recovery. CMN Hospitals donated the portable IV holders, Castle Room and life-saving equipment so that children like Trent can receive the finest care.
Maddex and his twin sister, Mariah, were born at premature at 23 weeks on November 22, 2010. Immediately taken to the Neonatal Intensive Care United at Wolfson Children’s Hospital, they were give a 10% chance of survival. Sadly, Mariah passed away 13 hours after their birth. Maddex, born at only 1lb 9oz and 11 inches long, fought to stay alive.
His parents visited him at least twice a day, every day. They remember spending hours staring blankly into his tiny, enclosed, temperature controlled incubator. “It was overwhelming to see him lying so peacefully attached to so many machines and to think about what the future might hold,” she reflects.
While in the NICU, Maddex suffered many complications and set-backs. The first days where plagued with breathing issues since he was born before his lungs had a chance to develop. He needed 24 hour breathing support on the ventilators. He also developed intraventricular hemorrhages which happens in newborns when bleeding occurs in fluid-filled areas of the brain. His bleeding severe but there was no way of telling the full extent of the damage. There was a possibility that Maddex would never see, hear, or recognize faces.
Within the first couple of months, Maddex had to undergo several surgeries and procedures. First, he had surgery to place a temporary reservoir in his head to help elevate some the spinal fluid that was starting to build up in the areas of his brain that were affected by the bleeding. The reservoir would allow the doctors to drain the excess fluid and take the pressure off his brain until Maddex was strong enough to handle a more intense surgery. Weeks later, the reservoir was removed, and Maddex had another surgery to place an IV shunt that would provide his body with a way to absorb the extra spinal fluid by running a tube from his brain to his abdomen.
Finally, after 6 long months in the NICU, Maddex came home May 10, 2011, almost 2 months after his original due date.
Madyson Grace is a wonderful 14 year old little girl. She is clever beyond her schooling and she has the knack of making everyone she meets smile and laugh. On March 5, 2008, her world changed with the discovery of a brain tumor, a stage 2 astrocytoma located across both sections of her thalamus and touching on the brain stem. Less than 10 days later, Madyson underwent surgery for a biopsy and a shunt to relieve the hydrocephalus.
Due to the nature of the tumor, both surgery and radiation were not viable treatment options. An 18 month course of chemo was recommended, although this treatment was delayed twice when her shunt needed to be repositioned.
During the battle, Madyson kept a countdown that allowed her to stay on track and focus on the big picture. She is a very loving girl, friend to all and has a never give up her spirit. She faces challenges head on with grace and poise. “She is the bravest person I know,” her father shares.
A Jacksonville native, Shawn isn’t allusive about the fact that he has cystic fibrosis. It is his reality but remains positive and lives each day to the fullest!
Cystic Fibrosis is a genetic disorder which causes the body to produce abnormally thick and sticky mucus that builds up in the breathing passages and pancreas, the organ that helps to break down and absorb food. This collection of sticky mucus results in life-threatening lung infections and serious digestion problems.
If you ask Shawn, he’ll tell you that the worst part of his disease is the way that it impacts his lungs. Cystic Fibrosis makes it hard, even painful for Shawn to breathe. He begins each day by taking 14 different medicines and completing breathing treatments. He also take countless trips to Wolfson Children’s Hospital for treatments and to fight off infections.
Despite all of his obstacles, Shawn stay positive and loves to play basketball and swim. He is an avid guitar player and refuses to let Cystic Fibrosis stop him from pursuing his dreams. Shawn continues to fight until a cure can be found!
Tabitha was a normal, curious 3-year old who enjoyed life and learning new things. On February 16, 2009, her family was enjoying the beautiful spring weather by cracking the windows throughout their two story house to allow the breeze to blow through.
Running upstairs to grab her favorite blanket, better known as “stinky,” Tabitha opened the bedroom window as far as she could to talk to her sisters playing outside. As she leaned forward, the screen popped out and Tabitha fell 15 feet down to the driveway.
Tabitha was rushed to the trauma center at UF Health Jacksonville. After she was intubated, doctors took CT scans of her brain and body to assess the damage. Tabitha was taken to the Pediatric Intensive Care Unit (PICU) for observation and received amazing care by specially trained medical staff. This care added to her swift recovery.
She was discharged 4 days later and returned to pre-school a short 4 weeks after the injury. As Tabitha’s brain continues to heal, doctors can learn the full affect of her injury. In the meantime, she continues to meet milestones and loves spending time with her family.
Baby Vincent was scheduled to be due on August 6, 2001. He was born on April 7, 2001 – 17 ½ weeks premature. The Neonatal Intensive Care (NICU) doctor at Wolfson Children’s Hospital gave him less than a 5% chance of survival. If he does survive, his parents were warned that he would probably never breathe, walk or eat on his own and could have severe brain damage. Dedra had faith in her son and told the doctors to "keep him alive, I don’t care how you do it."
Baby Vincent spent more than 200 hundred days in the hospital. Every day was touch and go while his family could only pray that he would gain strength. On the worst of days, doctors called the family while in route to the hospital and encouraging them to drive faster and pray Baby Vincent would be alive when they arrived. His parents rushed to his incubator in the NICU in time to see the nurse placing a resuscitation bag over Baby Vincent’s nose and mouth. For the next three and a half hours, she would gently push oxygen into his lungs through the special mask keeping him alive.
While he was very fragile, Baby Vincent was strong and a fighter. Dedra wasn’t allowed to hold him until early July so she would spend her time in the NICU staring at the equipment surrounding and keeping him alive. Noticing the Children’s Miracle Network Hospitals logo on her son’s machines, Dedra became an avid CMN Hospitals supported and passionately tells the story of Baby Vincent’s recovery because of funds donated to the hospital.
Vincent is now an active thirteen years old who enjoys spending time with his family, visiting Disney World and competing in the Special Olympics for Nassau County!
Prior to birth, Zoe was diagnosed with a congenital heart defect that caused her to undergo not one but two open-heart surgeries in the first few months of her life. Doctors at Wolfson Children's Hospital completed a repair of her heart by correcting six defects. They also removed a membranous web that was restricting blood flow and performed a heart catheter procedure. Zoe's family anticipates another surgery in the future, but she is doing remarkably well! They are thankful for their little miracle who enriches their lives in immeasurable ways.