A CHARGE Syndrome Warrior
On March 30th, 2023, Hunter was born. He was in respiratory distress and had to be transported to a different hospital with a NICU. During the first few days, many tests were run, and it was found that Hunter had a congenital heart disease called Tetralogy of Fallot. He was then transported to another hospital, where he spent the next 89 days in the PICU.
He had multiple tests run on him almost daily. Initially, his airway was the priority over his heart until Easter weekend. On Easter weekend, his oxygen was dropping, and they were unable to bring it up quickly, which led us to emergency heart surgery, where they placed a BT shunt.
He was intubated for over a month, with many attempts to extubate. Hunter was still unable to breathe on his own. He had a surgery that we were hopeful would help correct his airway. However, he was still unable to breathe on his own, and he needed a tracheostomy.
Once he had his tracheostomy, his real personality and character began to show. It was so amazing to watch the complete change from our boy, who had all of these tubes and wires hooked up to him, who had been very sedated since he was born, to a lively and happy baby we wished and prayed for.
Hunter also needed a g-tube, so yet another surgery was required. To go along with everything Hunter has going on, he also has severe hearing loss in both ears. He recently received a hearing aid and is hopeful about moving forward with a cochlear implant soon. While we were in the hospital, they did a genetic test. This test came back with results that helped explain all of Hunter's health challenges. He was diagnosed with CHARGE Syndrome. This is a very rare syndrome that is a large umbrella of health challenges for individuals with this syndrome. There is a lot of unknown as he grows stronger, bigger, and older, but so far, he has truly shown everyone that he is such a fighter!
Hunter had his complete heart repair on January 22nd, 2024. This is just one of many surgeries he will need in his future. Even with everything Hunter has had to go through, he is still the happiest and sweetest 2-year-old. We know he will continue to beat the odds and fight with everything he has, just like he has since day 1!
