Alexis was born in May 1986. After coming home from the hospital at three days old, she seemed disinterested in nursing.

Her formula intake was minimal and she continuously threw up. After noticing that she had failed to have a bowel movement within the first week of being home, her doctors were notified. Following that, she began to pass stool of diarrheal consistency. We continued to bring her to the doctors urging them that there was a problem, however they disagreed.

At four weeks old, she started producing a loud rumbling of gas and straining tremendously, without a bowel movement.

At this point she was referred to a pediatric surgeon who examined Alexis and said with 99 percent certainty that she had Hirschsprung’s disease. Despite the pathology report negative for Hirschsprung’s disease, the surgeon was confident in the initial diagnosis of Hirschsprungs and asked to see Alexis in a few weeks. In the meantime, she was treated for anal stenosis.

Over time, Alexis’ bowel problems persisted, alternating between diarrhea and constipation.

The constipation was so severe, we feared that she would suffer other injuries from all of the strain. We continued to stimulate a bowel movement to help her achieve elimination.

At three months old, we returned her for Hirschsprung’s disease testing.

All tests were negative for Hirschsprung’s disease. At six months old, Alexis weighed 12lbs. Her diet consisted of baby formula because she was unable to handle solid foods.

Alexis developed a severe illness (diarrhea and vomiting bile) and was treated for stomach flu. The combination of diarrhea, vomiting bile, dehydration and an increasingly swollen belly lead to her hospitalization. Alexis’ body was shutting down. She was in a convulsive state and there were tubes in every opening of her small 12lb body.

After being pumped full of antibiotics, Alexis needed emergency surgery to remove a bowel blockage.

She received an ileostomy and Hirschsprung’s disease was confirmed. About two months later, her pull-through was performed, and two months after that, her ileostomy was reversed.

There were some nuisance problems within the following year, but nothing compared to her first year of life. Alexis potty-trained quickly and gained an improved level of control. She was susceptible to stomach viruses as a child, but continued to have a seemingly “normal” school experience.

In retrospect, the worst part was not knowing what was going on. Our struggle with diagnosis was exhausting and significantly worse than if we had known what we were up against.

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