Leanne was born January 25, 2025. At birth it was discovered she had Tracheoesophageal fistula with an Esophageal Atresia (TEF-EA) Type C, which means that the upper part of her esophagus ended in a closed pouch and the lower part connected to her trachea. Literally, born unable to swallow.
At 2 days old Leanne had surgery to sever the esophagus/trachea connection and reattach the two sections of esophagus. The surgery went well, and she left the NICU after 17 days. However, at 6m old when she began to eat solids, Leanne spit up everything she ate. An esophagogram showed a narrowing of her esophagus at the surgical site, allowing only fluid to pass. She had a series of 3 dilations to re-open her esophagus. By the 3rd dilation, her eating had improved but she still couldn’t eat like a typical baby her age. A swallow study showed dysmotility in her lower esophagus, which affected how food moves down to her stomach. Even now, at 18m, her food still needs to be modified in order for her to eat. If it’s not or if she eats too fast, it sometimes will get stuck and she’ll spit it up. This may happen a few minutes after eating but at times has taken hours-to-days to dislodge.
Her TEF/EA is part of VACTERL Association, which is a collection of congenital birth defects that commonly occur together: Vertebral, Anal, Cardiac, Trachea, Esophageal, Renal and Limb. To be diagnosed as VACTERL, one needs to have a defect in at least 3 of the 7 systems. Leanne was found to have a hole in her heart, possible spinal issues, the trachea/esophagus connection and is polydactyl. These issues will affect her for life, so she has a wide team of doctors keeping an eye on her with periodic checkups. During her first year, Leanne also had flattening on the right side of her head. She wore a helmet between 3-9m and had physical therapy for a year to try to correct the issue, with minimal improvement. Finally at 13.5m she was diagnosed with craniosynostosis, a premature fusion of her right lambdoid suture (the rarest form of craniosynostosis.) At 15.5m she had Cranial Vault Remodeling Surgery, which consisted of removing the plates in the back of her head and un- fusing the suture, to prevent any intercranial pressure from forming. She is still healing but doing great.
Through all of this, she is the happiest little girl, always smiling. She loves her 4-year-old sister (who was just diagnosed with Lyme) and her 7-year-old brother. A true water baby, she LOVES the outdoors and anything to do with water and sand. And ironically, she loves to eat, which is improving as she is learning to chew better. Hopefully with age that will continue to improve. She currently has surgery scheduled for Oct 2026, another scheduled for Jan 2027, and time will tell what else she may need. But we know she’ll be smiling through it all!
Thank you so much for taking the time to learn about Leanne. We feel honored to be selected by the Shannon Daley Memorial Fund and are touched that others care about our little warrior as much as we do. From the bottom of our hearts, thank you to all the volunteers, sponsors, guests and everyone in between who make this event possible!