My son was born with a mecomium plug and passed it with help of and enema. He was then having regular bowel movements. We then switched his formula and he stopped pooping. Dr did an X-ray and showed a normal colon with no signs of hirshsprungs. We then switched his formula back to what he was on when he was pooping and he started going again. He is scheduled for a biopsy tomorrow but I’m so nervous to put him through it if he doesn’t really need it. What do you think? Should I do it or hold off on it until a later date?? I’m a new mom and am so worried and confused. I hate to put a 3 week old under anesthesia f it’s not really necessary and this disease is so uncommon Im havig a hard time getting info from people. Please help!!
Hi! My son also had Hd in 2003. I have since written an informational book for parents on the topic that is now #1` on Amazon. You can visit my website to read our story. http://www.hirschsprungsdiseasehelp.org/
Did you have the biopsy and if so how did it go? If he is pooping that is a good sign. Even if he has hirschsprungs it seems it must be a mild case. Either way I think I would have had the test run just to rule out or confirm hirschsprungs. My wife and I are raising our 7 year old grandson who by the way is in first grade and in a public school. He has hirschsprungs and on a scale of 1 to 10 with 1 being mild and 10 extreme he would be 8 or 9. He has a feeding tube (backpack) and colostomy bag and currently a central line. Please dont let that scare you, he is doing great. He is all boy, he rides a 4 wheeler, wrestles with friends, rides his bike,plays video games and is active in church.I hope this helps you.
My son had bowel movements for 3 weeks prior to his surgery…on his own. He passed his meconium but he didn’t eat and was very, very lethargic. He spit up each time he attempted a feed. Although he was having BM’s they were “ribbon like” and not large quantity. His x-ray did show an enlarged lower intestine. We were told he has average HD, not short or long. They removed 11cm in a laparoscopic surgery. He did not have a colostomy and is a 3 1/2 year old active, joyful, and gifted little boy. I’ll be happy to tell you more specifics about his surgery, struggles afterwards, and on going issues but it is a lot and you are in the early stages so let me know what specific questions you may have 
My son passed the meconium 18 hours after birth during the pediatrician’s exam, with help. She mentioned HD at the time because he hadn’t passed it on his own and wasn’t eating well through the night. He’d also spit up greenish bile. They sent him to the NICU for observation, determined he was okay and sent him home after an overnight. Three days later we found ourselves in the ER due to a very lethargic baby with a very distended belly. He wasn’t eating. They eventually diagnosed him with short segment HD (probably a 1 or 2 on the scale above). We too had never heard of it, but our guy showed very obvious and classic signs of HD- no appetite, distended belly, lethargy, vomiting of bile. I’m surprised that a biopsy has been suggested considering that your son was pooping, began pooping again, and the x-ray showed a normal colon. If the HD is there, it’s best to deal with it sooner rather than later, I’d think. When they are so little, it’s hard on us to seem go through the diagnosis and treatment methods, but they don’t remember any of it. You could reach out for a second opinion if you feel strongly against doing the biopsy. Not sure where you’re located, but we see Dr. Reichard at AI Dupont Children’s Hospital in Delaware. We’re happy with him and the results. As the person above commented, it does sound like a “mild” case of HD, if that’s what it is…our son didn’t need a colostomy. We were lucky. He was healthy and so we were able to do the pull-thru to remove a fairly small part of his bowel. He seems to be pooping now like any other 5 1/2 year old boy. Good luck to you! Stacey