Hirschsprung’s Disease

On the day following our son’s birth, a wild ride began that would lead us to find out that our son, Jack has a condition called Hirschprung’s Disease. It is a condition that affects the colon in that the ganglion cells (cells that make the intestine move) did not completely develop. As a result, Jack was born with an obstructed bowel and we had a very scary day 2 1/2. Thankfully, he was okay an the doctors at Children’s Hospital of Philadelphia were able to help him.

There is not  a ton of information out there on Hircshprung’s Disease and what that means for your child. I have decided to share our story, hoping we can help other families who might be experiencing similar challenges. I attempt to share things that we’ve learned to be helpful for us.

For now, here are some links to our story of living with Hirschprung’s Disease:

Interested in learning about Pull Through and Colostomy Take Down? Here’s our journey

Can’t seem to get those wafers to stick right? Check out Baby Colostomy Care: Finding the Right Fit

New to changing baby’s colostomy bag? Here is my tutorial Baby Colostomy Care: How to Change a Colostomy Bag

Trying to figure out how to keep baby’s arms out of the way when you’re doing a bag change? Baby Colostomy Care: How To Do an Infant Arm Swaddle to Change an Ostomy Bag

Does your baby need a colostomy and are you wondering what it looks like? What is an ostomy? What does an ostomy look like?

If you are looking for other families who are sharing the Hirschprung’s Disease journey, check out the Hirschprung’s Disease Families and Friends group and the Hirschprung’s Disease Help group on Facebook. Here are some blog posts from other families that I have found to be helpful too:

Richelle shares some great tips on her blog, the stoma hole cutter for wafers sounds like an absolute “must have”. I broke a lot of pairs of scissors during our time with and ostomy!

Natalie shares their families journey with their son who is a bit older than Jack (6 years old) on their blog.

The Weiss Family is sharing Joey’s Story of living with Hirschprung’s Disease on this blog here.

For information on research, education and awareness for children with Hirschsprung’s Disease visit REACH.


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