HIRSCHSPRUNG'S DISEASE & MY FAMILY
Nicole & Bryan,
Jesslyn (11yrs), Brooke (9 yrs), Kellen (5 yrs)
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 Kellen had nor for the terrible diaper rashes he suffered from after his pull-through operation.
Although we have a good hospital here in Bend, Or., there are no pediatric surgeons residing here. Fortunately for us, we had one of the best neonatologists in the country working at our hospital. He diagnosed Kellen right away and sent us to Emanuel Children's Hospital in Portland. 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 had to be Life-flighted three times to his doctors in Portland. At five months of age, Kellen had his operation redone and he has been doing well ever since.
I happened to be renewing my teaching license while all of this was happening. 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. Three years after the completion of my course work, the book is finally finished. The title is "Hirschsprung's Disease Solving the Puzzle - An Informational Guide for Parents & Medical Professionals."
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. Profits from the book will go to the Hirschsprung's Disease Gift Fund at Johns Hopkins University.
Courtney Nichols, Genetics Counselor at Johns Hopkins University says, "Thank you for offering to donate your profits to our research. We will use the money in our efforts to work toward gaining a better understanding of Hirschsprung's Disease genetics, which we hope will lead to better genetic counseling, diagnosis and treatment for individuals with Hirschsprung's Disease."
Thank you all for your support in this endeavor,
Nicole Murphy
