I hope you find a support group at a nearby children's hospital's genetic clinic. My daughter's former neighbor has two children with Hirschsprung's condition.
The family worked really hard with the children's doctors to get the proper nutrition and management for other needs. My grandson enjoyed his playtimes with his friend who had a Hirschsprung's condition. Community healthcare teamwork was very helpful.
These articles may be helpful. morbus hirsprung = megacolon.
http://en.wikipedia.org/wiki/Megacolon
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1379258/
http://www.mayoclinic.com/health/colectomy/MY00141/DSECTION=what-you-can-expect