Lil Reido's Story

Reid is our second child and was born normally as can usually be expected with a “childbirth” with no problems encountered. We brought him home and everything was normal for approx 6 months whilst he was being breast fed and then we introduced solids into his diet.

We noticed no real problems in the initial 6 weeks and then progressively his bowel movements dropped to a point where he was not going at all. We were told by our health centre nurse that this can be the norm with some children and shouldn’t worry as “all kids are different and it can be up to a week before they need to “pass”.

With this we persisted and travelled along for a while but noticed that he was uncomfortable with taking food by mouth and preferred to take more milk than solids (no solids and milk every 2 hours). By this stage his appearance was starting to look like he was ageing (later called “old man syndrome” by the doctors). He was no longer wanting any solids at all and had reverted back to milk only.

We returned to the GP and he got the maternal nurse to come down and show us how to give Reid an enema at home. Although this was a solution in the short term, she told Fiona (my wife) in confidence that this was not right and recommended we see a specific doctor that she knew of. My wife returned to our local GP and got a referral to this doctor. It just so happened that the day of the appointment, the specialist Professor from the children’s hospital happened to be visiting (in hindsight this was possibly what “saved Reid”.) Thank you Prof H.

The GP said that he believed things were not normal and that the Professor thought it could be a case of “hirschsprungs”. He, therefore, referred Reid for a series of biopsies, and then a scheduled a return visit to give us the results. These results showed that there was no apparent Hirschprungs disease, but as I noted before, the Professor disagreed with these results. He said later that when he first sighted Reid that he had all the “classic symptoms”, ie loss of appetite, wasting away, and appearing to be a 50 yr old man in a child’s skin).

Reid was admitted again to the children’s hospital and again given enemas and biopsies. He was then given barium X-rays which, from the professors and doctors analysis, showed that the lower 2-3 cm of his large intestine was “not active” (in that the ganglion nerves were non formed),

Reid was sent to theatre for a “pull through” operation that would “fix him up”. Prior to his entry to theatre we were told that we would be consulted if any other problems were experienced.

Needless to say approx 2 hours into the operation, we were called into a consulting room to be told that something unforseen had occurred and that Reid had in fact, (after multiple biopsies were performed), Hirchsprungs disease, that was up into 35cm of his intestine. It appears that in the barium x-rays, green means bad, dark means good. (they did not explain this to us when they showed us the x-rays).

“Well blow me down, this isn’t right . It can’t be happening to us”, I thought. “No way, they’re just coming out to tell us that he’s O.K.”

“Slow down”, I say to myself, “listen to what they are saying “. “No it’s still bad”, they said. “Can I give him mine (intestine)?” is my first question. Answer “No”. “Can Fiona?” “No”. “Well, what’s it all mean then”???

“It means Reid will have an ileostomy”. “A f***in’ what?” I say and am then explained the procedure. “No way he can’t , I’m not letting you”. “Are you sure”? they say. I am told unless it is done, he will not live long. Our answer: “Do it”. From that day Reid’s life began, he once again returned to that smiling, laughing little boy that I remembered instead of that crying, whingeing little boy we just couldn’t seem to help.

Initially we thought “How come?”, “Why us?”. Not anymore though. At first I did have trouble accepting Reid’s “problem” but luckily enough I have a brother that is extremely supportive. He told me something that I will always remember and those words were “The only problem you have is yourself. Reid is healthy. If you can’t accept it, how can you expect others to?”

He was so right. Reid is now going on 3 yrs old and is no different from other kids. Sure he poos from a different spot to other kids but “all kids are different”. This just makes him that little bit more special.

On ending, I would like to highlight the support my wife gives, she does practically all the requirements for Reid and deserves high credit for her work.

Obviously I could write a novel but I don’t think that’s what you’re after, so if people would like more info they can contact me.

Regards.

Glenn

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