Hirchsprung's disease

Bridget - posted on 10/03/2010 ( 4 moms have responded )




Hi! My son is preparing for surgery this Friday. He has been diagnosed with Hirchsprung's disease and has to have part of his large intestine removed. I am very nervous about this surgery, as my baby is only nine months old. I was just wondering if there were any other Mom's out there who have went through this that can offer any advice. Thanks.


Denikka - posted on 10/03/2010




I haven't had to go through that with my son, but my brother did.
His wasn't caught for WAY too long (stupid doctors/nurses withholding information and not putting 2 and 2 together) but he had the surgery and he came out just fine :)
I don't have much information about the actual procedures as I wasn't involved much in my siblings lives when they were young, but I wanted to offer some reassurance :)
I will warn you about the smell though XP I don't know whether it was just my brother or whether the disease had something to do with it, but that kid was TOXIC XD
The colonoscopy bags can be tricky to change, but you'll get the hang of it and it'll just be second nature, Much like changing a diaper I would assume.
My brother did have some problem with potty training as he got older, but once again, not sure if that was just him or the disease.
Other than that, research, research, research!!! Most doctors know very little about Hertzsprung's just because there isn't a lot of info out there. Definitely search out everything you can on your own and bring things to your doctors attention.
From what I know, there can be some developmental quirks that accompany this disease, so as your little one gets older, I would watch the differences between him and other kids. My brother has struggled a lot (and one more time, don't know if it's him/how he was raised or the disease) so I would definitely suggest watching for difficulties and quirks and addressing them early on.
Good luck with your son :) I'm sure the surgery will be a breeze :)

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Sharla - posted on 11/29/2011




my sister had hertzsprung disease and had surgery as a baby. She will be turning 27 in january. She just had her 2nd child. i also had a similar procedure done when I was in 8th grade for a form of hertzsprung disease, i am 30 and also have 2 kids.

Iridescent - posted on 03/27/2011




My mom's wasn't caught/diagnosed as it should have been, and she lived off laxatives from birth. At 33 years, her colon no longer worked, period, and she had 14 feet of her intestine removed and a colostomy placed. It was complicated for many reasons, but before she came home she had a revision done and her small intestine was hooked to her rectum and the colostomy removed (she was in the hospital for 30 days). She has diarrhea which is difficult to control even now (50 years old), but can function. The stool is quite acidic and foul, and can burn quickly. Diet may need to be altered because of the lack of intestine. I'm hoping this is in the past for you now, and all has gone well.

Kelly - posted on 03/27/2011




Hi Bridget when did they diagnosed your son??? My son is 17 months and they are looking to do a biopsy to see if he has this, but I thought this was usuallt caught when they are born?? What were the symptoms your son had??

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