KELLEN'S STORY Hello and welcome to my website. My name is Nicole Murphy and my story is about a rare disease called Hirschsprung's Disease (a disease of the colon where nerve cells are lacking in part of the intestine). Prior to the birth of my three children, I taught high school science and health for ten years. I loved teaching but chose to become a stay-at-home mom after my second child Brooke was born. Four years later, we had our son Kellen….. As it turned out, Kellen was born with Hirschsprung's Disease. When Kellen was first diagnosed with HD, all we were given was a small brochure on the topic. While it had basic information in it about the disease, I wanted to know more. As my husband and I were finding out, Hirschsprung's Disease had a lot of surprises in store for us. We weren't prepared for the constant bouts of enterocolitis, nor for the terrible diaper rashes Kellen suffered from after his pull-through operation.  |
Fortunately for us, we had one of the best neonatologists in the country working at our local hospital. He diagnosed Kellen right away and sent us to Emanuel Children's Hospital in Portland, Or. Unfortunately, Kellen's first pull-through operation was unsuccessful as he developed scarring at the site where the colon was reattached. He had repeated bouts of vomiting during the first few months of his life and eventually was unable to have a bowel movement. This was such a scary time for us because we just didn't know what to do for him. During this time, we were airlifted three times to the children’s hospital in Portland. At five months of age, Kellen had his operation redone was finally able to have a bowel movement on his own. While all of this was happening, I was in the process of renewing my teaching license. I decided to take an independent research course through our local college and naturally chose to research Hirschsprung's Disease. Several term papers later, my professor urged me to publish what I had learned. Five years after the completion of my course work, the revision of Hirschsprung’s Disease Solving the Puzzle is finally finished. Through my research, I discovered many things about Hirschsprung's Disease. My friends at the Hirschsprung's Support Network have inspired me to complete the book and have given me much needed advice. It is my hope that this book will help others living with Hirschsprung's Disease. Part of the profits from every book sold will go to the Hirschsprung's Disease Gift Fund at Johns Hopkins University. Thank you for your support in this endeavor, Nicole Murphy |
