I am a 43 year old male that was diagnosed with Hirschprung’s Disease at birth. 

In the fall of 2012, I flew out by myself to India, Thailand, and Istanbul for 2 months. I was not staying at high-end resorts, more of a backpacking and trekking trip. I spent time volunteering at a children’s home at the border of Thailand and Burma called Baan Dada. I traveled throughout India with a gentleman named Earl who left Boston 15 years ago and has never stopped traveling. His blog is an interesting read. I then spent some time with an Indian software developer that I work with. I finished the trip by spending a week in Istanbul. I had no concerns about planning this trip except for potential stomach/intestinal upset. I had some real worries about how I would cope with food and water in developing countries. At the time, I had not seen a Hirschprung specialist in 20 years. I did a Google search and found Dr. Goldstein. He was nice enough to see me even though he typically does not treat adults. I received no treatment before the trip and was given a prescription for some pretty standard antibiotics. In an ironic twist, I actually ended up having less stomach and intestinal upset than most of the Westerners I met during the trip

Hirschprung’s has been a lifelong challenge.

Luckily I don’t remember the varying hospitalizations that I had when I was very young. As a boy I remember making sure I was always in close proximity to a bathroom, trying to find a “private” bathroom so I would not be disturbed or ridiculed, hoping I would not suffer any leakage, dealing with gas pains and a bloated belly, having an extra pair of underwear, concerned about flatulence, stress over how a certain meal would affect me, having a restricted diet and not enjoying things like chocolate, hoping that I would not have an accident at a sleepover, not wanting to take off my shirt and reveal a scar that went across my belly. Many of these concerns have continued to some extent into adulthood.

I’m sure that it’s devastating for a parent to have a child that is diagnosed with Hirschprung’s.

As a society the goal is to provide our children with a life better than our own. We wonder about the challenges our child will face when diagnosed with Hirschprung’s disease. I’m sure all of the parents reading this will ensure that their child gets the best medical treatment in addition to providing a nurturing and understanding environment at home. That’s all a parent can do and it’s enough. My only advice is not to allow your child to wallow in self-pity or defer any of his activities or dreams. Hirschprung’s is just another challenge that your child will face and triumph in his lifetime. It’s not something that will impact his and your hopes and dreams.

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