A reader’s introduction to the adventures of Frankentestine: Part 1.

My son didn’t poop until he was 4 months old, and that first little doody cost upwards of $3 million.

This is the story of why.

L was born with gastroschisis, which means he had a hole in his abdominal wall. The cause(s) of gastroschisis are not known, which as you might imagine has been various degrees of crazy-making for me. But that’s a story for another day.

Gastroschisis can leave any or all of the abdominal organs forming outside the body. For L, it was just his small intestine, but the hole in his abdomen was so small that it allowed very little blood flow to that intestinal tissue, so it didn’t form properly, and it didn’t work.

We went through a series of three major surgeries in an attempt to reconstruct enough small intestine for him to get by on. The first was performed when he was just two hours old; that first night, our surgeon returned the intestinal tissue back into his belly and created a jejunostomy. I imagine most of you have heard of a colostomy, in which the colon is diverted out through a surgically-created opening in the abdomen and empties into a colostomy bag – a jejunostomy is similar, only much, much higher in the intestinal tract (in the jejunum).

L had only 10cm of small intestine from stomach to ostomy. That meant he didn’t have time to absorb anything before it exited, and too much milk going in could actually dehydrate him as it rushed on out. So when he started getting tiny little bottles when he was about a week old, he was limited to about a teaspoon of milk at a time, a handful of times a day.

Because he couldn’t eat or absorb nutrients through his gut, the NICU placed a PICC line (a more heavy-duty IV line) through which he received total parenteral nutrition (TPN) and lipids around the clock. TPN is a complex mixture of all the basic components of nutrition that is delivered straight to the bloodstream. In the haze of those early days, I was miffed for a short while that they would call it “parental nutrition” when really parental nutrition ought to be what was leaking through my shirt every few hours, thank you very much – but it turns out that parenteral means it bypasses the gut.

TPN saved L’s life. He would’ve starved without it. But it can also cause significant liver damage. We have been lucky; L’s liver seems to be unaffected by TPN so far. But I feel like I owe it to the TPN-dependent community to add this information, because it’s not uncommon for people already facing substantial health issues to wind up needing a liver transplant because TPN wreaks havoc on their system. This is infinitely frustrating in light of the fact that there’s an alternative version of the lipids component of TPN called Omegaven that could spare many of these livers, but it’s often unavailable to patients because insurance companies frequently refuse to cover it. /end rant. For now.

His second surgery, at two months old, was meant to salvage what tissue could be salvaged and then reconnect his intestinal tract. It turned out that salvaging meant spending 6.5 hours piecing together 15 tiny segments of tissue, each of which averaged only a little over a centimeter long. We lovingly dubbed this patchwork gut his “Frankentestine”; our surgeon told us L had just enough.

With so many connection points the risk of internal leaking was high (and before long that risk proved to be reality), and so the ostomy remained until a third surgery six weeks later. At that point L’s ostomy was taken down, his gut was reconnected and the real adventure began. We spent another month in the NICU before he was discharged to continue the very long, very slow process of rehabilitating his bowel at home.

To be continued….

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