Hirschsprung's Does NOT Equal Surgery (A David Update)

I'll try not to go into too much detail here (I wrote David's Hirschsprung's story in Part IPart II, and Part III, with an update here in case you'd like more of the background of the story.)
 but I just want this to be a little post on the internet that can be found if a parent is struggling with a later Hirschsprung's diagnosis or even the suspicion of HD.


SURGERY DOES NOT ALWAYS NEED TO BE YOUR ONLY OPTION.


Sometimes with Hirschsprung's, especially if it is long segment and symptoms appear immediately upon birth, surgery is necessary and life-saving.  Thank God for it.  However, that is not always the case but parents are told anyway that surgery is the ONLY option, THE treatment.  David's symptoms did not start until he was four months old and up until that point he, for all we could tell, seemed like a normal baby.  He was a bit harder than the others but part of me thought that was just his disposition or perhaps that I was just more tired from having two older children to care for as well.  And he did hate the carseat so much that I avoided going anywhere unless I had my husband with me in the car to soothe him.  Looking back, perhaps those were related to HD...but then again, maybe not.  Many babies have those traits without having HD.

When we finally got his Hirschsprung's diagnosis, the first few doctors not only were shocked that he did indeed have HD but he had made it to that age without surgery.  We were told (quite smugly, I have to add) multiple times that there was no possible way he had HD.  Once his biopsy confirmed that he did, the surgeon tried to immediately schedule his surgery because that is the accepted and routine treatment for Hirschsprung's no matter the age or circumstances.

Thank God for the internet.  We researched on our own and found chat rooms and testimonies online of others dealing with HD.  The common theme among many seemed to be that the surgery either was unsuccessful and needed to be redone and/or the complications from the surgery were serious and life-altering.  We had been successfully managing his HD symptoms for two years and came face to face with the possibility that complications from the "cure" could be far more serious and life changing than simply continuing to use the course of action that we had been.  In our situation, the cure could be worse than the disease.  There are DEFINITELY cases where the surgery works, works well, and the child walks away free from HD and able to live a normal life which is awesome.  Those people certainly are less likely to post their story and seek further support, I get that.  However, there was no guarantee that that would be our story.

It was a freeing thing indeed when I took him for a consult with another surgeon at a different and better hospital and asked him why we couldn't just continue to do what we were doing.  He said there was no valid reason we couldn't.  After much prayer and more research that has been and will continue to be our plan.  I would encourage anyone faced with a possible Hirschsprung's diagnosis at ANY age to look into seeing if Miralax alone is enough to postpone or even negate the need for surgery.  (Update: I've since learned that there is a growing concern about using Miralax with children and possible neurological and behavioral issues resulting in some children. That said, I still think parents should know all of their options before deciding the best course of action for their child.) If we were to face another Hirschsprung's diagnosis, without a doubt I would make absolutely certain that prolonged medication was not a possibility before consenting to surgery, especially with the multifaceted complications of having a newborn in the hospital undergoing major surgery.

I am so grateful that we are able to treat his HD with just a daily half dose of Miralax (we actually use the generic).  When the subject of David's HD came up with our new family doctor and how we'd treated and managed it so far she stated how much she thought Miralax was a wonderful life changing advancement especially in cases like this.  You cannot undo surgery and from everything I've found Miralax is one of the most benign medications on the market, almost akin to a supplement.  It's now become a simple part of the dinnertime routine.  He gets his special water and we make sure he drinks it.  The rare times when we are out and forget to bring something with us to make sure he gets his daily dose, we simply give him one as soon as we can.  Do I love the fact that my boy has to take this stuff every day especially me being all crunchy organic-like?  Not at all.  But I love that this stuff kept us from major surgery the results in which we were not confident.

So far, he has never had a case of enterocolitis or any infection related to HD.  He has never been admitted to the hospital for HD complications.  He was completely potty trained a few months before he turned three years old and now thrives as a normal four year old boy who loves to run, shoot things, play baseball, and get into trouble.  He's small for his age but that certainly is something our family is used to.  Our doctor didn't even think a followup barium scan was necessary since he's been thriving so well and it wouldn't really change our current course of action anyway.

As of now, and with the support of our new family doctor, our plan is to continue in the same way.  My hope remains that as he gets older his body will be strong enough and learn to compensate for the segment that is affected by the HD and it would be like it wasn't even there.  I am so thankful that we chose not to have the surgery.  I have no idea where his development would be and what potentially life changing complications could have arisen.  Yes, he could have possibly been completely rid of HD but for us, the risk just wasn't worth it.

If you happen to be reading this because you're facing a similar diagnosis and decisions, PLEASE email me with any questions you may have.  I'd love to help in any way I can and will share more details with you than I am comfortable sharing about my boy here.  PLEASE do not be afraid to get a second or third opinion and always do your own research.  Our experience with this has only strengthened my position that many doctors only know their own way of treating things and they are not always informed of the most up to date treatments.  Many want to do more when sometimes the best treatment is less.  In our situation, I am so very grateful we went with less.

Love him.

11 comments

  1. It is so wonderful that you figured out the least invasive approach for David. it is amazing how well it has turned out for him. You pull off his special water so well that I don't even notice it when I am staying with you.

    Grandma & Grumpy

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  2. Wow. I just went back and read all the posts about Hirchsprungs. What a road you've had. I'm so glad that David has parents like you who research and make decisions based on what's best for your family. He's a lucky boy.

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  3. I read all of your posts last night and just wanted to say that I've added David to my prayer list. I think you're an amazing mama who is very well informed of your son's issue. I'm so glad that the miralax works for him and that it's more like a supplement than heavy medication...that is a blessing.

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  4. Thank you for this post. I have a 7-month-old son I worry about. I suspect Hirschsprung's. Thank you for making the possibility a little less terrifying.

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    1. I hope our story can help and I'm so sorry you're going through this! Please feel free to email me if you think I can help any further.

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  5. I have read this with interest and was wondering if your son is able to eat whatever he wants. We have had some similar problems with our oldest when he was a baby, but he was never tested for HD. He just ended up in the NICU right after birth, but they could not tell us what his digestive issues were. Later we did remove dairy and gluten to get his symptoms under control and it made a difference. He is 18 now, but we still keep him off gluten and he still once a while has some problems.

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    1. Hi Eva, yes, he is now able to eat without any restrictions (well, besides the normal ones I already have for all the kids!). If dietary changes make a difference then it is likely not Hirschsprung's and some sort of dietary intolerance. Obviously, I'm not a doctor but Hirschsprung's symptoms will show themselves no matter what (unless someone were to go on an all liquid diet, I guess). I did a complete elimination diet when he was an infant and exclusively breastfed and it didn't make any difference. I'm sorry your son has had those issues but glad he seems otherwise healthy!

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    2. Thanks so much, Mary. Just curious, what are your "normal restrictions"?

      P.S. Do you belong to the homeschooling group COMHS? We do, but live too far away to participate in most events.

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    3. We try our best to eat only real foods and stay away from processed and unidentifiable ingredients. We don't do food dyes, hydrogenated oils, processed meats, and most corn syrup. I make most stuff from scratch, limit treats, try to locally source what we can (meat, milk, eggs) and get organic as far as we're able. It's far from perfect but I do what I can!

      And yes, we do!

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    4. Sounds similar to the way we eat. Too bad we have not met so far.

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