I finally got a chance to make sense of my notes from the conference.
There was a lot of talk about ETV at this conference. At this point ETV has about the same reliability as a shunt but is more appropriate for certain patients. For example ETV isn’t effective on babies because you need pressure in the cerebrospinal fluid to keep the hole open, but babies and their soft skulls have lower pressure than older kids or adults. ETV is more risky up front but has fewer problems in the long run than a shunt.
They talked about different kinds of shunts. Basically all the manufacturers are about the same. They each have their little gee-whiz features but in the end show the same rate of success and the same rate of malfunction. Programmable shunts, like Maria’s, allow doctors to change the flow rate but realistically they don’t have any need to. It just gives one more thing to break down. However in Maria’s case a programmable was appropriate because her ventricles were very large. They had to drain slowly to give her brain’s structure time to adjust to the changing pressure, then increased flow as pressure approached a normal level.
There is a ton of research just being done or right on the brink of being done. They are looking at new ways to understand what causes hydrocephalus, what effect it has on the brain, and how they can treat it. The shunt was invented only about 55 years ago. Before that they couldn’t do much to treat it. They’ve made strides as they understand it better and there is likely to be a lot of change over the next few decades.
The last night of the conference they had a big party with a talent show. The keynote speaker, Sherman Alexie was a guy whose mother had been told to abort the pregnancy because he would be born dead or a vegetable (his mother’s reply, “What kind of vegetable?”). Even after birth they said he would die or be severely brain damaged. He is now a college graduate, a successful author, screenwriter and standup comic, and has won numerous awards.
I heard five other women say that their OBs had told them to abort their pregnancies for the same reason. Apparently obstetricians know absolutely nothing about neonatal disorders.
After the conference we took our free gondola ride to the top of the mountain and hiked around. We went into Salt Lake to drop Rosanne at the airport then Cathy and I went to a planetarium to kill time before our flight. All in all pretty fun and in hindsight we could have taken Maria after all. At any given time usually there was one of us free to take her and she certainly would have been the cutest little girl in the place as always.