Sam was found to have a rare condition called “Hirschsprungs Disease”, a condition of the colon which prevents passing of stool.  The condition was named after the pediatrician who discovered it.  Sam’s case was not considered too severe, and was discovered very early, when he was born.

Within 12 hours of being born, Sam was no longer interested in breast feeding, which we thought was unusual.  Later in the day, as mom was recovering from an emergency C-section, I found Sam was throwing up a little.  Normally, a child of this age would be expected to “spit up” a little, but this was bright green, I mean almost flourecent.  Unless mom was some kind of alien, giving him green milk through her breast, something was terribly wrong.  I called the nursing staff.

They knew something was wrong too, no child should be spitting up bright green.  They told me it was bile from his stomach, but why?  The only way to find out was to take him back into the nursery and call for the doctor.

The doctor visited us some hours later, telling us she had called for a specialist.  She had a suspicion, but she needed the specialist to confirm it.  That night, sometime around midnight, we were awakened by both the doctor and the specialist, who was a pediatric surgeon.  We were told Sam had Hirschsrprungs disease, and had been taken to the pediatric ICU.  As you might imagine, we were very concerned.

Over the next couple of days, the nurses in the ICU worked on cleaning him out using saline enemas.  They cut off all food and drink by mouth.  Meanwhile, the surgeon was performing quick biopsies to confirm her suspicion.  Days later, Same went in for a pull-through procedure.  This was done entirely through his rectum, took out about seven inches of affected colon, and looked to be successful.  Unfortunately, a frozen biopsy, done after the surgery, showed she had not managed to remove all the affected colon.  She was not pleased, because the initial biopsy results were good, and these later results reversed the finding.  She decided to let it go and see how well Sam did.

Sam did fine for two years.  But in the last couple months, he has become much more bloated, and had started puking on a regular basis.  I had my suspicions, and so it was back to the surgeon who confirmed with x-rays, Sam needed more surgery.  We admitted him to the Hospital on the 15th of January, 2006. he underwent additional abdominal surgery to remove another six to seven inches of affected colon.  Now, he is in recovery, and doing very well.  Yesterday, he finally got to lose the catheter and the last IV tube.  I anticipate the doctor will let him come home today or tomorrow.

This time, the surgeon is very sure she removed the affected region; she had frozen biopsies done which are the most accurate.  She was inside his belly, so she could accurately access and see everything she needed.  She had a crack staff of other surgeons verifying her work.  And at this point, Sam seems to be passing juices a lot better than he was a couple weeks ago.  Things are looking up for him.  The best part is, he hasn’t had to have a colostomy at all.  That alone has provided a lot of relief for both mom and dad.

There you have it.  It’s been a rough road, but Sam is going to be alright.

Asa Jay

One Response to “Ever hear of Hirschsprungs Disease?”
  1. Victoria says:

    Just wondering how Sam is doing now? I’ve been online trying to find someone to talk to about this. My son born Jan 20/06 was diagnosed with the same operated on on Feb 23/06. He is now 15 months old we’ve been battling severe diaper rash. Doctors have told us that his colon is blocked & that the constant “leakage” is what is causing the consistent pain. I hate seeing him in so much pain & having to go through this every other week or so. My experience is very much the same as yours….I watched the nurses try & try to put in an IV, I cried for the first 2 weeks of his life. I’d be very interested to hear how your son is doing & if the battle is done? Looking forward to hearing from you. Sincerely,

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