Born with hirschprungs

The story of Samantha

Our son Shane was diagnosed with Hirschsprung’s disease at about 3-5 days old. Something we had no idea existed. We were in the hospital getting familiarized with our son who we were waiting for for so long to meet and after a few days of him not passing any stool they then took an x ray and suddenly our hearts sunk into our stomachs as they told us there was a narrowing in his intestines causing a blockage and then they took him from us and transferred him to a hospital that had a neonatal unit still not knowing exactly what was wrong with him they put him in an incubator the 3rd day after birth and had him transported 2 hrs away. A few days go by and they were the longest and most heart breaking days of our entire lives as we waited for some sort of diagnosis. They put a tube in his throat and loaded him with fatty acids and lipids in an iv since he couldn’t pass any stool and he sat there several days. They did an barium enema and then a biopsy was done because they were unsure from the barium enema if he had Hirschprungs disease. Waiting for results they then told us he was lacking the ganglion cells in there and that they had to do another biopsy to know for how far of a segment was lacking these cells which he told us he wont know until he was in there doing another biopsy using laparoscopy which was done by going through the belly button. He also told us while he was already in there he would remove what needed to be removed if it was short and if it was long there was a chance our son would come out with a colostomy. We sat there in shock since this was so rare that there wasn’t much of an option besides if it was long to take and do enemas till he was older or the colostomy. We did everything we could to find out more before we made our decision then we decided that this needed to be done and had faith in his surgeon and told him to do what he feels is best. Shane was lucky to have a short segment but then was not so lucky to have his whole rectum removed and a piece of his colon. The rectum is a very important process in digestion without it there can cause our little man to have constipation. Shane is doing well post surgery.