Can a Child Outgrow Hirschsprung's?


This is kind of a niche post, I know.  But I write it for that person who may be dealing with a possible Hirschsprung's diagnosis for their child and who may be googling just this question desperately looking for an answer as they try to figure out what to do.  

If you're new here (or just don't remember), our third born David was diagnosed with Hirschsprung's Disease when he was two years old, confirmed by two separate biopsies.  Put simply, part of his intestines lack ganglion cells that are responsible for moving things along the digestive tract.  I won't write out his whole story here since I've written it all out before.  You can read it all in these posts:


And now?  Now I get the absolute joy to report back that at the age of just-turned-7, I think it's safe to say that David has "outgrown" his Hirschsprung's!!  Our instincts were right that if we continued on the course of medicating the least amount possible that his body would gradually be able to compensate for the cells that are not there.  You guys.  He has not had a dose of medicine in three months.  I gradually cut down doses and spaced them more and more apart until we were giving him 1/4 of a dose every few days.  Then we just stopped.  We're monitoring him to make sure he is going regularly and all is healthy and he's able to go on his own without any medication and without surgery.  We are so so thankful and thrilled.  He's still very tiny for his age but from everything we've read that is not related to Hirschsprung's.  All our kids are gifted with genes that put them in the low percentiles for height and weight (20-25%) but he's in the fifth percentile.  (We did get him tested for endocrine issues just in case and all results came back normal.)  He's got a huge appetite and is often a bigger eater than his older brothers.  It seems he's just a small kid.  Someone's got to be that percentile, I guess!

My hunch as he was going through the diagnosis and we were handling it was that as he grew, his body might have the potential to make up for the lack of cells, either because the affected segment of intestine remained the same size (while the rest grew) or because his muscles grew stronger and therefore able to push better.  Or possibly both.  My guess is that were he to have a biopsy now that there would still be a segment without ganglion cells but that maybe it hasn't grown with the rest of the intestines.  So, I can't say officially he's outgrown Hirschsprung's itself but if he's outgrown the symptoms does it really matter??  We do know that he will have to just be a bit more aware as he gets older that he is eliminating regularly but, like anyone, I'm sure he'll be able to tell quickly if he's not.

Now, of course, not everyone with Hirschsprung's Disease will be able to outgrow it in this way.  For those with more severe HD where a greater portion of the intestines is affected, pull-through surgery may be immediately necessary after birth (although I do think medications should be tried first to prolong surgery as long as possible).  But I am absolutely convinced that because he was exclusively breastfed (breastmilk is much easier to digest and passes much more easily through the newborn's digestive system) AND because it appears that his segment was shorter he avoided major life-altering surgery as a newborn.  I am so very very grateful that I sought a second opinion and we made the call not to do surgery that had the very real potential of major lifelong complications.  (Think lifetime incontinence and diapers, not to mention the colostomy bag that he would have required for 6 months prior to surgery and as he healed.)  I'm so so grateful that I'm so stubborn about nursing and God has allowed me the ability to do it.  It was that that kept symptoms from appearing until he was four months old giving us more options to consider for treatment.  Had he been given formula or anything else as a newborn, his symptoms would have appeared immediately and he would have been immediately brought in for the pull-through surgery to remove intestine with who knows what complications and lifelong implications on such a tiny body.  

My hope is that researchers will some day investigate and report on other ways to successfully treat Hirschsprung's without surgery.  We were told and read that for a Hirschsprung's diagnosis, the ONLY treatment was surgery when clearly that is not the case.  For those who have a child that has been diagnosed, I would do everything possible to exclusively breastfeed any future babies right away and as long as possible.  Since we know that HD can run in families it would make sense that should a new baby be affected doing so could mitigate symptoms for him or her, potentially eliminating the 'need' for surgery as it did for us.  (Does that make sense?  I hope so!)  If you are dealing with a Hirschsprung's diagnosis, know that surgery does not necessarily have to be your only option.  It *may* be the best option for your child but it may not.  It certainly wasn't for us.  I'm happy to answer any questions as best I can!  I'm certainly no doctor, just a mom who asked questions and wasn't satisfied with the answers I was getting.  If sharing our experience can help someone else, I'm happy to do so.

And finally, thanks and praise ultimately go to God who answered our prayers for guidance in making the best decisions possible for our little boy and for giving his little body the strength and ability to overcome this disease.  Thank you, Jesus.  He's Yours first anyway, Lord.  Thank you for letting us have him and please keep helping us to raise him.



6 comments

  1. Praise God! David is so blessed to have such a fierce and conscientious mom caring for him <3 <3 <3

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  2. Wow this has my brain a'spinning! When my second born was 2, I cut down nursing on demand to two times a day, then one, then zero. During this time period, he got to where he would go 5 days between bms. We did everything under the sun, multiple doctor visits, and nothing worked. I have clear memories of him eating a whole pint of blueberries and still, nothing. We finally guessed it was psychological and started him on Miralax, like you we had to use a huge dose. I have felt so much guilt over that and knowing that you have used it to makes me feel better (silly I know). He is six now and I do a "dusting" in his morning juice still probably 5 days a week because we have stopped it before to ill results. I don't necessarily think he has what your son does, but I have always felt that there was something different about how his bowels worked - fiber should have some effect and it just didn't help at all! Anyway, I do think the end is in sight for us too, thankfully, but I still thank you for sharing this story. It always helps to know somebody else is walking a similar road!

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  3. Thanks for sharing this- what an awesome story of great parents doing their due diligence, gathering info, and trusting their gut! (Pun intended ;) )

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  4. Wow...I truly hope your son continues to do well. I really must say I am VERY disturbed by this entire post. Hirschsprung's is NOT something you can "outgrow". You are born without the nerve cells. This can not change. And I know from personal experience (I am 43 years old with Hirschsprungs) that even though you have "regular" movements things do still back up inside. And the damage caused from that is irreversible. I find it very upsetting that you are offering a cure of sorts to something that has NO CURE. I pray that your son had a very mild case of HD, I will read more of his story. I am happy you are able to manage his without surgery or medications. You really should not announce he is cured when that is not possible. You are merely managing it...not providing him with a cure.

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    1. Hi Crystal, I'm sorry you were so upset by my post and I'm sorry that you've also struggled with this disease. I think it's important to note that not once did I use the word cure. In fact, I was very careful in my language and explicitly stated that he is still lacking the ganglion cells and that his body has been able to compensate. I specifically stated that I *can't* say that he has outgrown it but that he has outgrown the symptoms. I hope that if you read it again you'll see that I am not promising anyone anything. I'm simply sharing our story and providing more information for parents who need to make decisions for their child and deserve to have access to complete information. Most mainstream information about HD does not accurately reflect our experience and if there is one family I can help by sharing our story then I'm happy with that. God bless.

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    2. Having a granddaughter with Hirshsprungs I have read a lot about it. I'm sure I recall reading a scholarly article suggesting some diagnosis were in fact Psuedo Hirshprungs and that the ganglion cells continued to develop after birth. I think it was an Asian study.

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