Dr. Duplessi’s news was the worst case scenario. We didn’t dare imagine that possibility before meeting with him. It was totally surreal to us. We were standing in his office, on the left a poster showing the brain as it is supposed to look and on the right the MRI of Ella’s brain. It looked sickeningly different than the poster. A lot of what he said is somewhat of a blur. The minute we got the gist of what he was saying, we couldn’t very much listen to the rest, and kept tuning out. Two things he made very clear, Ella will have challenges ahead (the hospital way of saying problems), and she is very likely to have seizures, as the structure of her brain more or less guarantees it.
Sure enough today, two days after the talk with him, we started identifying seizures in Ella. It is difficult to make sure they are seizures in a little baby. Babies tend to be moving around in a twitching way normally. Dr. Duplessis gave us some identifying marks for a seizure. To our horror Ella started displaying them. With a faraway look in her eyes she rhythmically contracted several muscles in perfect synchronization in a repetitive fashion. This started to repeat itself at an increasing rate. At first it showed up every couple of hours, it would last about a minute. It is a totally helpless situation for you because there is absolutely nothing you can do to stop it and watching her twitch this way makes you want to bury yourself in a deep hole and never have to witness it again.