Hunter’s Story

When Hunter was born on March 30th 2023, he was in respiratory distress and had to be transported to a different hospital with a NICU. During his first few days of life, many tests were run and it was found that Hunter had a congenital heart disease called Tetralogy of Fallot. He was then transported to UNC Chapel Hill, where he spent the next 89 days in the PICU. While at UNC, Hunter had several tests run on him every single day. At first, figuring out his airway was the priority over his heart. That shifted on Easter weekend when his oxygen was dropping and the doctors were unable to bring it up quickly. This led to emergency heart surgery where a BT shunt was placed. 

Hunter was intubated for over a month, with many attempts to extubate. Unfortunately, he was still unable to breathe on his own. A surgery was performed in the hopes to help correct his airway. However, after this surgery, he was still unable to breathe on his own and needed a tracheostomy. Once the tracheostomy was performed, Hunter’s real personality and character began to show. It was so amazing for his family to watch the complete change from a boy who had tubes and wires hooked up to him and had been very sedated since he was born to a lively and happy baby. 

Hunter then began to gain his strength and size but needed to learn to eat from a bottle. Yet another challenge in the journey. He tried his hardest but was unable to latch properly to a bottle so the decision was made for him to get a G-tube. This was a bit of a bumpy road to start but he has since made huge improvements. On top of all of this, Hunter also has severe hearing loss in both ears. He recently received a hearing aid for one of them.

While in the hospital a genetic test was performed. The results from this test helped explain Hunter’s many health challenges. He was diagnosed with CHARGE Syndrome. This is a very rare syndrome that is a large umbrella of various health challenges that individuals with this syndrome face. There are a lot of unknowns as he grows stronger, bigger and older, but in his short life thus far he has truly shown everyone that he is such a fighter!

Last Monday (January 22nd 2024), Hunter underwent a heart surgery that was successful! This is just one of many surgeries he will need in his future. Despite all of these challenges, Hunter’s family knows he will continue to “Beat the Odds” and fight with everything in him just like he has since day one!