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


Heidi Kaiven

City/State: Washington, New Jersey
Relation, age of affected child: son, 13
Diagnosis: Hirschsprung’s Disease
Length of PTN membership: 7 years
Conferences attended: 2009, 2010, 2012, 2016
PTN Involvement: PTN Care Guides

Hi! My name is Heidi Kaiven and I am running for the Board of Directors for PTN. In 2003, my son, Eddie, was born with Hirschsprung’s Disease. Eddie has a permanent colostomy due to several failed pull‐thru surgeries. He doesn’t let it stop him— he plays AAA level ice hockey as a goaltender.

We have been members of PTN for about seven years. As a family, we have attended four conferences (New Orleans, Tucson, Atlanta, and Orlando). The conferences have been the highlight of being a PTN member. Each member of the family gets so much out of attending. Lasting friendships have been made and so much knowledge has been learned.

I would like to serve on the Board to continue the mission of PTN. The networking and connections made with other parents who “get” what we are going through are  invaluable. I would like to help new families understand that they are not alone in what they are going through. I feel that I could use my skills as an educator to help spread the mission of PTN. I have helped update the PTN pamphlet on Hirschsprung’s Disease.

I am also active in a local ostomy support group. Even though Eddie is the only child in the group, I have spoken to them about PTN and shared PTN’s mission. I look forward to working with PTN and its members as a member of the Board.