Shepherd St. Hilaire of Valrico is just a little more than a year old, but he has endured more than most adults. Shepherd was born without a trachea (tracheal agenesis), a rare congenital anomaly that’s been documented less than 200 times since 1900. His esophagus and trachea never separated during fetal development, so he was born with one common channel from which his lungs are attached.
Anything from his stomach can enter his lungs, and breathing can force air into his stomach.
“Over the course of 359 days, Shep had dozens of staged surgeries, with the longest being nearly 18 hours,” said his mother, Tara. “His team turned his common channel (technically esophagus) into a trachea but combined his own rib cartilage with titanium splints (the first ever) to keep his airway patent. They then needed to build him an esophagus since they had just used his common channel for an airway. For this they did a Roux-en-Y jejunostomy. This is a piece of his intestine that’s pulled up and connected to the cricoid completely bypassing his stomach. He’s fed via G-tube into his stomach, but anything by mouth bypasses the stomach and drains right into the intestines. After months of smaller surgeries, procedures and recovery, we finally got to go home after almost one year.”
After being home from the hospital for only one week, Shepherd ended up getting pneumonia which sent him back to the hospital for another month.
“We then were home for about a month before having to call 911 for respiratory distress,” Tara said. “He was rushed to Brandon Hospital and then medevaced him to Johns Hopkins, where they found that one of his titanium splints had eroded a hole into his esophagus. They removed a portion of the upper ring, which ultimately caused his airway to collapse enough to the point that he needed a tracheostomy. We spent another two months in the PICU before finally getting discharged.”
This journey has not only been tough for Shepherd but also for his family.
“We both work full-time jobs and are raising our other son, who is 5 years old,” Tara said. “We’d work all day and one of us would go and spend the night at the hospital with Shepherd while the other stayed back with our oldest son. This routine was every day, Monday-Friday, with all of us going to visit on the weekends. Trying to juggle work, parenting and splitting time between hospital and home for that extended period of time is completely exhausting.”
The family is currently looking for qualified RNs with trach and vent experience for home nursing because Shepherd’s care is 24/7.
“Our hope for Shepherd is that he can stay out of the hospital and live a somewhat normal life,” Tara said. “He is generally the happiest baby and has a smile that will melt your heart.”
To follow Shepherd’s journey, visit his Instagram page at www.instagram.com/sheps_world25/. Donations toward his care can also be made through his GoFundMe page at https://gofund.me/763b70bd3.
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