Andrew’s Story shared by his mom:

Andrew was born 12-21-2007 in Seattle Washington and immediately rushed to Seattle Children’s Hospital NICU where they confirmed Hirschsprung’s Disease (complicated to explain, googling it would be best, but it’s where the colon doesn’t develop right and he had to have 8″ removed for him to be able to stool ‘normally’.) He had his first surgery at 8 days old, and soon after started stooling normally. After he stabilized and stopped getting repeated intestinal infections, we were discharged (after almost a month and a half in the hospital) and for 10 months everything was great in terms of his heath.

At 10 months old up through last October, he started getting more and more infections (enterocolitis and cdiff), each time damaging his colon and slowing down his already slow motility. By last October we knew something was very wrong again, he was pooping 1/2″ ribbons instead of normal stools, and they were literally burning the skin off of his bottom and were NOT normal in appearance. Life was miserable while we ran test after test, tried cream after cream, and did everything we could to try to help him and keep him comfortable. It started to take 2 people to change his diaper (his issues make it impossible to toilet train him), one to pin him down and one to clean and change.

In December of last year Andrew got the flu, and with his system already moving things through so slowly, it led to a bacterial overgrowth in his small intestine, which produced so much gas his colon blew up like a balloon. By March we finally pinned down the diagnosis, but by then he had to have a cecostomy button placed so we could flush out his colon from top to bottom and basically force him to empty, as he’d lost all ability to stool or even pass gas on his own. The button was too late to help at first, as having the bacterial overgrowth go untreated for so long his colon was too weak to pass even saline down and out to clean him. Although we’d already had 5 hospitalizations by then alone trying to help him, we still ended up spending all of April out at Stanford, because by that point he was literally being starved to death, we just couldn’t get rid of the bacteria that was stealing all of his oral nutrition and in turn producing gas that was weakening his colon further (because with his tightening sphincter he couldn’t toot the gas out), and further diminishing his appetite. You could see every bone in his body, he was smaller than my 2 year old, yet his belly was gargantuan. However by the end of April we had his cecostomy flushes working, his sphincter relaxed with the help of botox (allowing the flushes to come through instead of holding them  back) and after some hard core nutritional therapy he was stable enough to go home, but has been on a feeding tube ever since, as he still just won’t eat enough on his own. He’s at a good weight now but every time we do a test to see if he can graduate from needing the nighttime feeds, he stalls and loses weight again, though more slowly each time so eventually he shouldn’t need the feeding tube anymore.

Our joy at being released after a month and thinking with his flushes working that we were home free was short lived, as within a month we were fighting that bacteria AGAIN. By this time we got the name of a fantastic local surgeon, Dr. Allshouse, up at Valley Children’s, and Allshouse specializes in kids like Andrew who have numerous bowl problems.

He has been amazing and Andrew’s been steadily improving ever since, though despite Allshouse’s best efforts Andrew has been hospitalized every other month since for varying reasons, had several more surgeries, now has a gastrostomy button as well (we call him the bionic boy lovingly, and he thinks it’s an awesome nickname!)

Andrew also has a condition called neurogenic bladder. It takes many forms, and while most it means an overactive bladder, for Andrew it means that he can’t feel the growing need to ‘go’. This, combined with the many many necessary uses of strong pain meds that have the unfortunate side effect of inhibiting his ability to fully empty his bladder, means he now has a bladder that reaches up above his belly button, several times the normal size. Although he will eventually grow into the size of his bladder (roughly adult size), he will never regain the ability to feel the need to go until he is already dangerously full, which presents a reasonable risk of rupture if he were to bump into something or fall.

Photography by Brittany Wilbur