Alexis was born in May 1986, 5lbs 14ozs, on the pregnancy due date. Labour was short and not too terribly intense for a birth. After coming home from the hospital at 3 days old, I gave up breastfeeding within 2 days because the baby just did not seem interested in nursing. I put her on formula but she still took in very small amounts and threw up a lot. I noticed that she did not have a bowel movement at all in the first week that we were home and reported it to the doctor. When she started passing stool, she eliminated continually for 2 days - kind of diarrhea consistency. Concerned, I kept taking her to the doctor every few days. I felt there was a problem, but the doctor disagreed, thinking I was just an over anxious new mother.

At four weeks old, I noticed the baby had loud gas rumblings and would strain tremendously without producing a bowel movement - so much so she had what looked to be hemorrhoids. At this point, we were referred to pediatric surgeons who examined her and were 99% sure she had Hirschsprung's Disease (HD), a congenital condition whereby there is a lack of nerve cells (in the bowel) necessary to excrete waste.

However, the pathology report did not show Hirschsprung's. The surgeon still suspected HD and asked us to return her in a few weeks for further testing. In the meantime, he was treating her for anal stenosis.

Although improved by the medically recommended stretching therapy, we continued to experience bowel problems, alternate diarrhea and constipation. The constipation would be so severe that sometimes she would labour so hard to produce a B.M. that we seriously feared heart failure or rupture in our tiny baby.

We would have to stimulate a movement , help the baby complete elimination, use

suppositories and stool softeners, hoping that she would outgrow these problems. She was not thriving or growing much but was ironically a complaisant baby, despite the pain.

We returned her for testing for HD at 3 months of age but it again proved nothing. In hindsight, I now understand it is very difficult and takes a very skilled pathologist to correctly detect the absence of ganglion cells in a biopsy.