Luke was born on November 30, 1995. He was a large, healthy baby at 8 lbs. 8oz. He ate very heartily after birth and was the picture of contentedness. Gradually, however, he seemed to want to sleep more than eat and appeared very uncomfortable. Throughout the day, the nurses tried everything they could think of to entice him to wake up and eat but he just wasn’t interested. At this time, our doctor was becoming concerned because he wasn’t having any bowel movements on his own. He would only pass when "helped" along by the doctor.

On his second day the doctor was worried because Luke’s stomach was very distended, so they took some x-rays. The x-ray showed a very large blockage in Luke’s colon—I’ll never forget the doctor’s words when he brought the results to me. He said "You have a very sick boy." I don’t think I have ever been as scared as I was at that moment. They arranged to have him flown to a larger hospital where he was tested and diagnosed with Hirschsprung’s Disease. Within hours he was given a colostomy, and we were able to take him home a week later.

The next few months passed without any glitches. Luke was a very happy, contented baby, and once we got over our fear of his colostomy we had no trouble taking care of it.

He steadily gained weight over the next few months, and a Swenson pullthrough was scheduled for May 6, 1996, just after he turned 5 months old. He weighed a whopping 18 pounds.

The week of the surgery was a very scary time for us. For a short while I found myself wondering what we had done to our child…he appeared to be in so much pain, and his happy, contented spirit seemed to have vanished. But gradually, his pain subsided and the surgery was declared successful. Luke’s cheerful disposition also returned.

We brought him home after the surgery and life returned to normal. The only problem we faced was the severe diaper rashes that it seems all kids get after pullthrough. After much trial and error, we found that Lotrimin cleared up the worst of them, and if we kept medicated baby powder or Vaseline on his bottom between changes we could avoid most rashes.

When Luke neared two years of age, I began to grow very concerned that he might be incontinent. He was having 6-8 very loose diapers a day. I had a hard time finding any diapers that wouldn’t leak. We started to look at what he was eating and how that might effect his colon. We discovered that milk and ice cream didn’t agree with him, and pretty much cut those out of his diet. This made a vast improvement right away, and as time passed and he got older, the runny diapers gradually decreased.

Luke is 3 & #189; years old now. He is fully potty trained and suffers no effects from his Hirschsprung’s. Since we completed potty training, he has only has bowel movements once a day or every other day. We have been fortunate in the fact that he has never had any of the illnesses that sometimes plague kids with Hirschsprung’s, such as enterocolitis. He hasn’t been back to the doctor since, other than yearly check-ups with his surgeon and his regular paediatric visits.

I found the Guardian group while researching Hirschsprung’s a little over a year ago. Although Luke doesn’t have any recurring problems, I feel that it is always best to have all the information you can get your hands on. When we found out about Luke’s diagnosis, I had never heard of it and didn’t know anyone else who had it. We just stumbled through it ourselves, and I always thought how much easier it would be if I had another parent going through the same thing to talk to. It is my hope that new parents experiencing the initial stages of a Hirschsprung’s diagnosis will find encouragement and strength from Luke’s story. I want them to realise that although Hirschsprung’s is a serious condition, it can be treated successfully and your child can go on to lead a healthy, normal life. Luke is living proof of this!