Meet Caleb
CALEB’S STORY
All parents say that they would go to the ends of the earth for the sake of their children. Luckily, few parents ever have to really make good on that vow. The family of Caleb Fisher, though, has done all of that and more. Caleb’s diagnosis came at their 20-week anatomy scan. Until then, the pregnancy had gone completely as expected –Jenna, Caleb’s mom, was preoccupied picking out names and decorating the nursery in their home of Palm Springs, California with her daughter Avery and husband Andy. But like so many others in the CDH community, everything changed at that anatomy scan.
The family went to four different California hospitals, all of which gave Caleb a 15-20% chance of survival, and one even going on to encourage the family to terminate their pregnancy. They were underestimating the mettle and resilience of the Fisher family. “We were willing to do whatever it took,” Jenna reflected, “We needed to find a doctor who was willing to do whatever it took too.” Their search led the Fishers across the United States to John Hopkins All Children’s Hospital in St. Petersburg, Florida. Pediatric surgeon Dr. Kays and his team were the first to offer the Fisher’s real hope. That hope led them to rent out their California home, pack up their belongings, and move into a motorhome and across the country in Jenna’s third trimester.
Caleb made his debut just a few weeks later at 39 weeks when Jenna was induced and all 18 people in the room went to work. “What Caleb needed was most important,” she remembers. After a brief glimpse at her newborn baby boy, Caleb was intubated and wheeled off to get the care he needed. Jenna was reunited with him 8 hours later, for what was just the beginning of their journey.
Caleb seemed to be doing well. After being on ECMO for 9 days, and 3½ months in hospital care, the hospital was training the Fishers for homecare and discussing discharge when things rapidly went downhill. “Caleb would turn purple, his oxygen would drop,” Jenna said. He was suffering from severe tracheomalacia–collapsing of his airway. After two surgeries, the difficulties continued, Dr. Smithers–Caleb’s airway surgeon–was determined but stumped. Caleb’s whole medical team stood around him and brainstormed for an hour. Dr. Kays finally suggested a tracheotomy, and from there, the long road to recovery began. The trach provided sufficient pressure for Caleb’s airway, and after his recovery and weaning him off of his medications, Caleb finally worked his way to discharge at 10-months old.
These days Caleb is busy doing what toddlers do best–spreading joy in the world around him. He wakes up excited to play with his big sister Avery and is thriving in his daily routines in their new home in Florida, making up for lost time on the milestones he missed during his hospital stay. Though he’s still 100% fed through his g-tube, the rest of his day is pretty typical for a toddler. Lots of playing and laughing and Mickey Mouse’s Clubhouse.
“He’s the most joyful and happy baby,” Jenna said. “After so much uncertainty, we are so grateful for the stability of routine and the help and support of the CDH community.”
As told to Fore Hadley by Jenna Fisher aka “Mom”
About the Fore Hadley Angels in the NICU Fund
Support and proceeds for the Fore Hadley Angels in the NICU Fund will go towards assisting current and future families like Caleb’s, by providing financial contributions to assist families with the costs associated with extended, long distance travel and living arrangements. Costs that are often a must to ensure the proper specialty care for CDH babies.