Bram's Story
Bram was born with TEF (Tracheal Esophageal Fistula) which means his esophagus was not attached to his stomach. The condition was not known until Bram was born but was detected right away and within 24 hours he was in surgery to attach his esophagus to his stomach. The surgery was a success. They also installed a G-Tube while they were in there just in case because many kids with TEF have troubles swallowing so they have to be fed directly into their stomach.
Bram was able to swallow initially but after multiple follow up procedures (6) to stretch his esophagus he developed an oral aversion and wouldn’t take any food or drink by mouth from the time he was 6 months old and that still continues today. It was a good thing he has his G-tube. He takes 4 meals a day by G-tube on a regular schedule. He also had a Gastro doctor he sees regularly and a dietitian.
It is common for TEF kids to have other defects and issues with their bodies. Bram was diagnosed with Developmental Delay at about 2 years old. He is non verbal and didn’t walk until he was over 3 years old. He works with an Occupational Therapist every week to help develop his motor skills. He also wore a head band (helmet) to correct the shape of his head from his time in the NICU. He wore the band for over a year which is 4 times the normal length of time needed.
When he was almost 4 years old he was diagnosed with an undersized corpus Collausum which is the part of the brain in the middle that connects the left and right sides of the brain. This could be the cause of his developmental delay. He has also been diagnosed with “at risk for autism”.
Through all of these challenges Bram has been the happiest funnest kid to be around. He smiles and laughs all day long and is very active. He runs around the house all day non stop. He doesn’t communicate verbally but he doesn’t need to for us to know he is having a blast. We love him so much and couldn’t imagine life without him. He is a constant reminder to us that challenges do not define our happiness.