Hirschsprung's: Experiences and Regrets

I think Boo, my eldest, got the worst from my inexperience and ignorance of this disease.

When I went to a pediatric surgeon he had "a matter of fact" attidude. He told me that Boo has to undergo rectal biopsy to prove if he indeed has Hirschsprung's. If it came out positive he will automatically have a temporary colostomy (a procedure where the colone is exposed through an opening on the tummy) where he can pass stool. After a few months he will have the pull-through operation (the affected segment will be cut and the remaining colon reattached to the rectum). The third operation will be the closure of the colostomy.

Deep down inside I really did not want him to have a colostomy. I asked my doctor if can I just perform enema everyday instead. He said that it would be more difficult, that Boo may be prone to inffection etc...Then I asked why we can't just do a one-step procedure or why not just perform the pull through immediately. He said it was very risky. I did not know much about this disease much less the options available. I was in shock and all that was in my mind is to go through this steps so that my baby will be well again. He was a well know consultant so I trusted his judgement.

We went throught the three procedures blind. We were not told that a common side-effect of the pull through operation was constant, unabating diarrhea! It was undeareable. It was not that I had to change his diapers 20 times a day but the severe diaper rash that went with it. It was not actually a diaper rash anymore. To describe it, it's like a fruit peeler went through his buttom. It was constantly weeping or bleeding. We had to hold him down to be able to cleanse the area. I had to stop my own tears seeing how much he suffered. He finished all his surgeries at 8 months old. Up until about 2.5 years of age he never knew a day where he did not go to the toilet 10 to 15 times per day. Even now at 3 he still has bouts of diarrhea and there are certain foods he can't eat as they cause the problem.

My deepest, deepest regret is that I did not do research nor did I get a second opinion. Later I discovered that if the Hirschsprung's is just short there is another way to it. A less invasive surgery with a very good prognosis. Proof is my daughter who also has Hirschsprung's. No diarrheas!

For Ysa, I went to a colorectal surgeon instead. He proposed rectal myectomy. Imagine the colon as a rubber tube. The tube is tight and you have to insert a rod with a slightly bigger diameter than the tube. To ease the inserting you scrape a portion of the tube's wall along its lenght to loosen it. This is what they do in myectomy. They get a small strip of the intestinal wall along its length, loosening it and along stool to pass. It was less invasive and complications were minimal it at all present.

Ysa just had one surgery with very short hospital stay. She never had a case of diarrhea as Boo had. I also had a friend whose son went throught the same procedure and his son is doing well. He is also 3 years old now.

I had to learn from my mistake the hard way. Even until now I beat myself for not looking into other options with Boo. I feel so sorry for him because he had to go throught 3 surgeries and the unnecessary complications. I can't help but say "If only I knew of this procedure before...." But we can't turn back time. I am writing this blog so that those whose children have Hirschsprung's may know that there are options available. Talk to your doctor, talk to several doctors.

Personally, I will not go back to a pediatric surgeon. I will go to a specialist instead. Why? because a pediatric surgeon is still a general surgeon only this time it is with smaller patients. Specialists however hone their skills on one body sytem and perfect it if they can. That is just my opinion.

Hirschsprung's Disease

For those who do not know this disease, Hirschsprung's is a condition where a section of the large intestine either does not have nerve cells or has them but are defective. As a result that section is constantly constricted and prevents stool from passing.

My son was diagnosed with this disease at 2 months of age, my daughter at 1 and a half. They are not twins, by the way. I bore them 2 years apart. I delivered both my children normally without any anesthsia. At first they seemed to be physically ok. They were able to pass stool for the first 24 hours of life. Over the suceeding weeks I noticed that their stools got smaller and smaller. The frequency was getting longer and longer. Sometimes they did not pass stool for 3 days. The first month of was the most difficult. We not only had to adjust to the demands of a new baby but also to the disease that was yet undiscovered. They cried a lot and we just could not pacify them.

For Boo, my eldest it was by accident that I discovered and concluded that there was something wrong. He had high fever and the doctor prescribed a suppository anti-pyretic. When I inserted the suppository he immediately passed out a large quantity of very soft stool. I ruled out constipation because his stool was not hard. Plus he was breastfed which tend to make stools soft.

For Ysa, my second baby it was a like reliving a nightmare all over again! I saw the very same signs. I cried for about a week. I just didn't know if I still had it in me to go through the process again. We were still coping with the problems brought on with the surgeries Boo had now another one?