Casey’s Circle
Hi Marty, thank you for talking with us. Please share about Casey’s birth and the ups and downs of her medically complex life.
We were expecting a healthy baby and I had planned to return to work following maternity leave. Casey's traumatic birth had us make some big changes to our plans. My husband continued to work and I was able to stop working and be a stay at home mom for Casey. She required around the clock care, and it was a full time job just managing her appointments, medications, etc.
Casey suffered a severe brain injury at birth leaving her with no reflexes (no gag, suck, swallow or blink). Her airway was at constant risk and she had horrible reflux that just compounded things. She was born at a small hospital in California and at 1 month old they transferred her to a larger NICU so that she could get a gtube and nissan fundoplication. Everything that could go wrong did go wrong during that procedure and she had a really hard time recovering. Once she was able to take some feeds she still had horrible reflex as the fundo was not tight enough. For the first few years of her life we slowly worked up to 40mls/hr running her feeds pretty much 24x7. We tried GJ with J feeds a few times, but it never went well.
During Casey's nearly 10 years of life I learned a lot. Mostly I learned what really matters in life, but I also learned a lot of medical things.
Thank you for sharing. Medical life is so tricky. Please share with us about Casey’s legacy and all that you learned from Casey.
During Casey's life we learned how to modify the world for her. We met lots of families in waiting rooms, and parent groups and started to invite them to come along on Casey's outings/adventures. Eventually we started to host little holiday events as well. Then at Casey's service, one of the parents got up and talked about how much Casey's birthday parties meant to her and her daughter, and how they always felt included. My husband and I both knew right away that we could not stop doing these events, but rather had to find a way to make them Casey's legacy.
We created a nonprofit called Casey's Circle and have grown the events, added new ones, and offer tools and resources for families. We offer bereavement events and resources as well. Many of my co-workers at the hospital have started to volunteer at the events, and we always invite all of our patients as well. Casey's Circle events are open to all families with special needs, are ALWAYS free to families, and are designed to meet the needs of the most medically complex. Casey's Circle is her legacy, and each year new families learn about Casey and the impact she had on the world.