A long story short…
My PhD advisor, a developmental psychologist, recently had her first baby – unfortunately, this baby was born with the long-segment form of Hirschsprung’s Disease. This means that Max has only 25 cm of ganglionated intestine; to survive he needs to mainline fatty acids a couple times per day. Such complete IV nutrition is typically supplied in the form of Omega-6′s, which are massively damaging to the liver.
This means nearly every baby with a short-gut is soon on a liver transplant list. (Needless to say, this treats the symptom, not the cause; intestinal transplants are still highly experimental.) The babies gradually turn from pink, to yellow, to sickly green, and may develop widespread allergies to a variety of real foods, should they ever be able to eat them.
A new IV nutrition product – Omegaven, based on Omega-3s instead of 6′s – appears to alleviate this problem, based on around 3 published case studies and maybe 30 more lives not yet documented in the scientific literature. This latter category includes Max, who has recently been removed from the liver transplant list and is gradually turning pink again (it starts with the toes, and creeps upwards over the course of several weeks).
Of course, this kind of evidence falls far short of the standards that insurance companies require to cover the treatment. By my understanding, Omegaven costs several hundred dollars per day out of pocket, meaning that even the people who know about this alternative are frequently unable to afford it.
My advisor has struggled to “get the word out” about this treatment, which is still wayy under the radar and considered highly experimental, even though the current statistics (something like 27 out of 30 babies showing drastic improvement) are pretty good by psych standards.
My advisor has chronicled her baby’s life so far, starting a few days before he was born, continuing to their slow revelation about the extent of Max’s problems, through their struggle with getting Omegaven, and to Max’s current relatively healthy state.
Eurekalert press release on Omegaven.
Dr. Puder, the doctor spearheading the use of Omegaven in babies with short bowels.
Spread the word and it might save someone’s life…