Once upon a time (ok, about 6 months ago), a very very cute little boy was born.
He’s my sister’s boyfriend [aka my brother outlaw]‘s nephew (in case you’re wondering about the title).
Now, little Bo is a cute little rapscallion (as are most kids at that age), and having two little ones of my own, I know how stressful that time can be for a new parent. But I have no idea what kind of stress his parents are going through, because Bo got dealt a rare (and fairly tough) hand: His small intestine doesn’t work.
There’s a technical name for it (Microvilli Inclusion Disease, or MVID for short), but it’s incredibly rare. There are less than 10 cases a year in the US, as far as I know, and none of them have been born to a hollywood celebrity, or a senator, or some such, so there’s no foundation around to help these people out, just the best medicine modern insurance can buy.
The treatment for this, and this is the part where the hand gets even tougher, is something called TPN. It’s something originally designed for short term use in patients that can’t use a feeding tube, and chronic usage can eventually cause liver failure. There are very very few adult survivors of MVID, but very few die from lack of nutrition.
Fortunately, there’s an alternative that’s starting to gain traction in the US thanks to an experimental program at Boston Children’s Hospital, called Omegaven. In just a few months in Boston, little Bo has lost all his jaundice and is a normal healthy baby boy. (other than that feeding line). This treatment, while still experimental, can hopefully help kids with Short Gut Syndrome (SGS) and MVID to live normal, happy… well, let’s just say: live. And that’s something pretty amazing.
Update: The Omegaven wikipedia article has a link to this WSJ story from 2006, A Doctor’s Push For Drug Pits Him Against Its Maker,
which details some of the regulatory hurdles the Boston researchers have faced.