Laura is my first child. She was born on March 21, 1993, and weighed 6lb 9oz. I had a long delivery with her, but the results where breath taking. She was beautiful. I was not prepared at all for any problems with my new baby. The doctors came to me the day after she was born and notified me she had not passed her meconium plug. I didn't even know what the meconium plug was. They told me she had Cystic Fibrosis, Short Gut, or Hirschsprung's Disease. The only one I had heard of was CB. She was too small to be tested so I felt this looming cloud hanging over me as I left the hospital to start the most traumatic journey of my life.

She had the typical symptoms. She slept all the time, wouldn't eat, or have bowel movements. I took her to the doctor after a week, and they admitted her to the hospital for dehydration. She was producing stool but not passing it, but no one seemed to think that was important. I think about this in retrospect. They tested her for Cystic Fibrosis, but it came out negative. So after three days they released her.

She still slept all the time, wouldn't eat, or have bowel movements. Then she started to throw up bile and her belly was getting distended. Family members told me she was probably constipated. How could she be, I was breastfeeding? Was it me? At night she would sometimes scream inconsolably. I thought, "stop crying, I want to go back to sleep!" Little did I know what kind of pain she must have been in.

I remember clearly the events leading up to her hospitalisation. It was Easter, and I was worried because she still hadn't passed any stool, now three weeks. Her throwing up was getting worse. Even after I showed my relatives her distended belly, now with spider veins, family members told me to try prune juice. She'll pass when she's ready they said.

But I trusted my instincts. I went to the doctor's office again, but this time I got the new doctor. He listened to me and could tell I was concerned about how she looked. The nurse whisked her away for a x-ray, and he came back after a few minutes. I could tell by the look on his face that it was serious. He told me, exactly this way, to go straight to Children's Hospital, do not get gas, do not stop to call anyone, do not stop to get anything to eat. There will be people waiting for you when you get there but do it now. Then he showed me her x-ray. Her bowel looked like a blown up balloon. It was 4:30 PM. When I got to the emergency room, a resident ran up to me and asked if my baby was Laura. I said yes, and then she took her from me and another person took me into a conference room. It was all happening so fast that I did not have time to react. The nurse explained to me that time is of the essence for Laura, but she wanted to explain what Laura would look like when I see her next. She is dehydrated, so she will have an IV. They need to take blood to test. After only a few minutes I went back to be with her.

What I saw was my little baby, laying on this adult gurney, screaming. There were about 8 people over her, trying to get the IV in, checking out her tiny body, taking blood. Why were they doing all this?!!! It was 5:15 PM.

Then a doctor came and said they needed to do a test to confirm what they thought was wrong. They needed to give her a barium enema. My little girl, not even 8 pounds yet, had barium shot into her bottom and they strapped her onto some machine that could turn her around while they took these x-rays. Having to strap your baby's head arms, legs, down to immobilise her was tearing me apart. She should be kicking, smiling. My husband didn't even know I was there yet.

By 6 PM the doctor's had diagnosed her with Hirschsprung's Disease. Hirschsprung's Disease? I couldn't even spell it. The doctor who would be doing the surgery was explaining to me what would happen. I didn't even know what a colostomy was.

The whole week I lived at the hospital. I missed out on Waco. But I was blessed with a wonderful ostomy nurse who helped me understand what I needed to do as a parent to help my baby survive.

She had her pull through in October at 7 months. She is a smiling, redheaded, freckle faced, boy chasing 7 year old. Our genetic counselling did not find any heredity of HD, but I constantly look for new information on HD so I can pass it on to Laura.

I had three more children after Laura, and they were spared HD. The worst part of it all is the emotions that race through a person. That's what made me decide to donate my time to Children's Hospital to help parents deal with HD.