Our son, Karter, was born on June 26, 2016 via emergency C section following a spontaneous fetal maternal hemorrhage. As a result, Karter suffered a massive brain injury. After four days in the NICU, the doctors gave us no other choice but to remove life support. They said his brain injury was too severe to have any quality of life – that he would never be able to suck, swallow, breathe, see, hear, walk, or talk on his own. It was beyond devastating. On July 1, 2016 we removed life support.
To everyone's surprise Karter survived two days in the NICU, so they sent us home on hospice. It was an excruciatingly painful and agonizing time. Karter continued to fight for his life during the next weeks, and thanks to our decision to readmit him to the hospital, his life was saved. The first year of his life was a giant roller coaster, not knowing if Karter would live to see his first birthday.
Not only did Karter survive, but he is thriving and progressing at his own rate. Of course his injury has left him with several challenges. He has been officially diagnosed with spastic quadriplegia cerebral palsy, microcephaly, has a g-tube, is considered non-mobile/non-verbal and has had seizures. While he is globally delayed in every sense of the word, these labels do not define him. He has the sweetest, silliest personality and most infectious smile! And, most importantly, he brings us joy, gratitude, and perspective of what’s important.
Having Crescent Cove as a physical place to go during those initial days would have been game-changing. We were sent home on hospice with people who only had experience with geriatric hospice and as a result, we endured so much more trauma than necessary. I can't help but wonder what our story would have been like if Crescent Cove was an option back then.
It is so apparent why Crescent Cove needs to exist. The support, love, and skill it requires to take care of a pediatric hospice patient is unmatched by your team. I hope that if/when we are back in that place, our Crescent Cove family will be there. And in the meantime, Karter will continue to be spoiled with such wonderful care and attention during respite stays at Crescent Cove. We are beyond grateful to have you on our team!
–Tiffany, Kole, Maddie, Karter, and Gabby
Read more about the adorable and Kourageous Karter at kourageouskarter.org/blog