I am a 43-year-old male that was diagnosed with Hirschprung’s Disease at birth.
I’m the youngest of 4 siblings, with a twin sister who was born without the same digestive issues as me. My Hirschprung’s Disease diagnosis came quickly after birth because of the symptoms that I had at the time, and a colostomy was put in until I was strong enough for surgery.
My parents faced a tough decision. They could have surgery done right away by less experienced surgeons or wait for a specialist from another state who was developing a potentially better in the long-term surgical technique. Thankfully, they chose to wait. The surgery, which took place when I was around two and a half years old, was described by the surgeon as a "12 on a scale of 1 to 10," which shows how complex it was. Considering it was a new procedure on an infant, I'm incredibly grateful for the skill of the surgeons and their team. The surgery went very well, and I was able to come home after some time recovering in the hospital.
Despite the surgery and some ongoing complications, I had a pretty normal childhood. There were regular follow-up appointments, of course, but the biggest challenge for me was the social side of things. Dealing with the embarrassment of digestive issues can be tough, and sometimes avoiding social situations altogether seems easier. However, for young people with HD, it's important to learn how to manage that social "risk" to build strong relationships and social skills that are crucial later in life. Having a supportive family with three siblings definitely helped, but I do wish I'd had more information about HD and its effects growing up. Understanding your body and condition is a powerful tool for coping with the challenges of HD.
After graduating high school lived in Switzerland for 6 months as a volunteer, went to college, and got a master’s degree in business. I am now an executive at my family’s business, enjoying travel, exercise, hiking, and spending time with my family and friends. I do have to be careful about what I eat and still have some bouts of upset stomach, but they are fewer and farther between than they used to be growing up. I don’t personally know anyone else who has HD but I have become more active in online HD communities, and it has been great connecting more with others who have gone through the same things I’ve gone through. I’m glad that parents of HD children have more resources and knowledge available to them through the Internet- knowledge is certainly the best first step to helping your kids thrive. If I have 1 piece of advice for parents of HD children, it would be to help them through their times of embarrassment and teach them how to cope with these situations in a healthy way instead of just avoiding them altogether.