Ryan’s story begins with his father David’s battle with Hirschsprung’s disease, who wasn’t diagnosed until a couple months into his life. Although healthy now, he battled a colostomy bag and incontinence throughout childhood. We knew there would be a chance that Ryan would be born with Hirschsprung’s disease, but believed it wouldn’t happen. Ryan nursed perfectly immediately after birth and passed his meconium. The next morning, all of that changed. His belly became distended, he refused to nurse and an NG tube pumping formula into his belly made it much worse. We were transferred to Wolfson’s Children’s Hospital neonatal intensive care unit in Jacksonville, Florida, where a million tests had to be done before doctors confirmed Hirschsprung’s disease. At five days old, he had a Sauve pull-through done laprascopically and we went home after a full 11 miserable days in NICU.
We battled chronic constipation (distended abdomen) for 15 months, doing bowel irrigations when needed until we tried more biopsies (which came back “having ganglion nerve cells”) and a couple rounds of botox injections into his rectum and anus. The constipation continued and after a diagnosis of failure to thrive, we had Ryan sit through a colonic manometry study at Cincinnati Children’s Hospital. The doctors told us that his entire colon contracted irregularly, but ganglion cells were present throughout. We came home and placed an illieostomy hoping that resting his colon would help it heal. Unfortunately, a month later, Ryan was in the hospital with entercolitis, so after recovering, we added a colostomy. Our goal was to do everything possible to keep his colon, but on September 9, 2010, Ryan had a total colectomy and is now living with an illieostomy.
Our son’s story is not over, but he has been extremely healthy for enough time to help him gain back his weight and enjoy life as a very special three-year-old. We are just waiting for the right time to do his final Duhamel pull-through and begin to face whatever nuances Hirschsprung’s disease will throw our way.