Pseudo

The baby boy had horns. Two big round lumps growing from his brow, two cephalohematomas, bruises of the soft infantile skull that shrank with each post-natal day. His horns, a birth accident, but not one of any consequence, seemingly marked him from birth as a troublemaker. And in a way, he was trouble. Not that he behaved poorly, quite the opposite in fact. He was, to put it mildly, quite adorable. His round eyes took in the room with that innocence that rarely seems to last even weeks, and he rarely fussed. He took everything in stride, from the hospital crib he lived in to the tubes we fed him with. Even the two loops of his small bowel protruding from his side in a man-made point of access couldn't perturb this little guys day.

He'd been here for a month. He'd been on Earth for two. He was born happy and healthy, but with a distressing tendency to vomit. This isn't unheard of in babies, so his pediatricians weren't too worried. Not, at least, until each succesive test kept coming back negative. It wasn't the usual things, the pyloric stenosis, the duodenal atresia. There were no visible obstructions in his intestines, no problem we could point to, nothing to say "here. this is what we need to do." They pulled the ostomy (the loops of intestines) out to try to correct a problem, try to further diagnose. They ran test after test, all the while feeding him a mix of fats, sugars, proteins and salt through his minature veins. But every time they tried to feed him, every time they tried to get him back to normal, he threw up.

They took a sample of his intestines. Perhaps its an extremely early onset inflammatory bowel disease. Perhaps he has a strange infection. Either of these we could work with, work on. Instead, they found only an absence: he didn't have any nerves. You might think this wouldn't be a problem, but you need nerves in your intestines. They drive things forward, onward and downward, from stomach to the porcelain throne. Pseudo-obstruction, we said with a grimace, the word Pseudo belying the severity of the problem. Almost-obstruction, not-quite-obstruction, seems like it wouldnt be as bad as the real deal right?

But a blockage we can fix, a blockage we can clean out, set right. Even dead intestine can be removed and tied back together, leaving a shorter but functional system behind. He had no nerves, anywhere. His intestines would never work.

He lay there in his crib, wiggling happily in my powerless care. His parents asked question after question, hoping and praying for options, for prognosis. We tell them he will survive on TPN (IV feeding) for many years until his liver gives out. We tell them that Pittsburgh does a total small bowel transplant. We tell them that the outcomes have been improving. We mention, but do not focus on, the fact that the improvement is from 100% mortality to a 3-5 year life span post-op. And each day I check up on my newly alive and slowly dying patient, and each day he looks at me like I am something new and marvelous.