Information, Education, Support and Advocacy for
Families, Children, Teens and Adults Who Are Living With The Challenges of
Congenital Anorectal, Colorectal or Urogenital Disorders


 

Rachel Hayden

City/State: Cibolo, Texas
Relation, age of affected individual: son, 6
Diagnosis: Hirschsprung disease, redo pull‐thru, Malone
PTN member for 2 years

I have practiced as a Physician Assistant in general pediatrics for the past 10 years. In the past six years, I have expanded my knowledge on Hirschsprung Disease and long‐term management of this chronic disease.

My son was born in July 2010 and was diagnosed with Hirschsprung Disease two weeks after his birth. Although my knowledge of the disease was limited at the time, I was
concerned he had this disease by the second day of his life. Many of the medical professionals in the hospital knew of the disease, but very few knew about it in detail. I was determined to learn as much about the disease as I could. As my son grew, I learned more about his condition as a parent and a medical professional. I talked with other parents who have children affected by congenital anorectal conditions, such as Hirschsprung disease, cloaca, and imperforate anus. My son was doing better overall, but he still had frequent stools.

The medical team at Nationwide Children’s Hospital examined him and recommended a second pull‐thru along with a Malone appendicostomy. While he was there, I networked with other families who were going through similar situations. These conversations were extremely helpful. These experiences gave me a new insight on Bowel Management Programs and a better understanding of what parents endure when taking care of a child with chronic health care needs.

Becoming a board member would be an exciting and rewarding opportunity. I look forward to learning more about these complex disorders and sharing that knowledge with other people. We can supply NICUs with more information so they can provide parents with more options for treatment, including referral information to Pediatric Colorectal Centers. This equips parents with the tools they need to make the best choices for their child, especially in the case of surgical correction. I am excited for an opportunity to advocate for children and families living with these conditions and to continue to be an advocate for mine. Thank you for your consideration.