Does anyone on here have any experience with Hirschsprung Disease? We are at children's hospital with my 4 day old waiting for a biopsy and I'm really struggling trying to figure out how bad the recovery will be if this is what he has and he needs to have surgery in a few weeks, etc. Did you have any complications from the disorder after the surgery? Thanks.
I just want him to be healthy and feel better and am feeling pretty gutted and helpless watching the different diagnostic procedures.
wonderful pomelo / 30692 posts
@cityliving: I don't have any experience, but you and your sweet baby are in my thoughts. Wishing you all some good luck. 
pear / 1881 posts
Our niece has it. From what I know, she wouldn't poop much in the days after birth, but was still sent home. She kept losing weight and eventually, they brought her to a children's hospital. It took about a week to figure out what was going on and at about 2 weeks old, they finally determined it was Hirschsprungs. They did surgery at only a few weeks old to take out part of the intestine and had to keep taking more because part wasn't alive. At one point, they disconnected the intestine from the colon and she was given a bag and had that for a number of months. Eventually, they reattached to the colon and would have to do stretches to the colon/intestine fairly frequently with some device. My SIL and BIL could do this at home. They've always had to be careful to make sure she doesn't get sick and therefore, my BIL is a stay at home dad at the moment. She did go into the hospital a few times when she got sick since they have to be so careful.
Currently, she is almost 5 years old and is potty trained, which took a bit longer than most kids because of her shortened intestine. They do need to bring her right away if she needs to poo, but all in all, she is just a normal girl.
They did try for a 2nd child and were scared that the baby would have it too, but luckily their son does not.
I'm so sorry you are going through this. It is so, so scary Please keep us updated with the biopsy results.
pear / 1599 posts
My bff's DS was born with hirschsprung disease. It took awhile to get clear answers for them and to get the care they needed. They left one children's hospital for another because they were not comfortable with the level of care, they wanted to rush through things and didn't give them time to think about any options. In the end he had a colostomy bag through age 1 I think. I remember it was a struggle for a few years to get everything working correctly. But he is a completely normal 11 year old now.
grapefruit / 4800 posts
We thought about testing our daughter but the pediatrician had us hold off since she had no feeding/ gaining weight issues. She pooped in the hospital initially and if we bent her knees but after that not even bicycling her legs worked - from about 2 weeks to almost 4 months she really couldn't poop on her own. When she'd get fussy and bend her knees in a certain way we'd use essentially a windi to help alleviate gas or allow her to poo. Then she started pooping on her own right before her 4 month appt. The pediatrician didn't have an answer and neither do we, but she's had nothing else like that and she's almost 4 yo now. My other 2 kids did also not have that issue. Best wishes, sorry you guys are going through all this.
coffee bean / 48 posts
@Adira: thanks, I appreciate that.
Thank you all so much for sharing your experiences, it really helped to direct some of our questions with the surgeon. We are fortunate to be at a good children's hospital (and I'm also thankful to a great pediatrician who took my concerns seriously). We should have the biopsy results back in the next 24 hours but so far he is doing well considering so we are hoping it is limited to a small portion of his colon if this is what it is and we will be learning working on home irrigations shortly.
pear / 1881 posts
@cityliving: I was thinking of you. Have you received any further information??
coffee bean / 48 posts
@NorthStar: Yes, sorry we got lost in newborn land! Much to the surgeon's surprise his biopsy came back negative for Hirchsprung's despite a standard presentation of it and he has been pooping on his own like a champ since the enema. We are still waiting to rule out a few more serious possibilities, but we have been discharged from the hospital now and are pretty hopeful at this point that he just needed a jump start. He's still spitting up a lot which has me nervous,, but I think if it hadn't been for this experience I would have been inclined to write that off as a typical baby issue rather than a red flag (and I've already taken him and a bunch of burp clothes to the pediatrician for confirmation since discharge.) Thanks for thinking of us and sharing your niece and newphew's experience, it really helped me to understand how it could work out first hand.
pear / 1881 posts
@cityliving: Oh, I'm glad to hear it came back negative! What a relief! Spit up could be reflux or a number of things. I hope you can find your groove soon and that he gets the hang of things.
| Today | Monthly Record | |
|---|---|---|
| Topics | 0 | 1 |
| Posts | 1 | 3 |
Ask for Help
Make a Suggestion
Frequently Asked Questions
Bee Levels
Acronyms
Most Viewed Posts
Hellobee Gold
Hellobee Recipes
Hellobee Features
Hellobee Contests
Baby-led Weaning
Bento Boxes
Breastfeeding
Newborn Essentials
Parties
Postpartum Care Essentials
Sensory Play Activities
Sleep Training
Starting Solids Gear
Transitioning to Toddler Bed
All Series
Who We Are
About the Bloggers
About the Hostesses
Contributing Bloggers
Apply to Blog
Apply to Hostess
Submit a Guest Blog
Hellobee Buttons
How We Make Money
Community Policies
- Google Plus
- Stumbleupon
- Twitter
- Facebook
- Pinterest
- Favorite0
8 comments