Eva (or The Peanut as she was known in my pregnancy) was born in April 2014 at 37 weeks. Before she was born I knew there were some issues. I had had multiple scans during my pregnancy as well as an amnio. After getting the all clear from the amnio at 15 weeks, I learned at the 20 week scan that she might have issues with her eye and heart. Later scans showed potential issues in her brain. During the rest of the pregnancy these concerns were alleviated and the only remaining issue was her left eye, which we would talk to opthalmologists about getting a prosthetic for. To follow our pregnancy rollercoaster ride start with post one, What’s Normal Anyway?
From the moment she was born, the Peanut brought the drama. She was floppy and not breathing. When she did start breathing it was a sad mewing as her little chest heaved up and down.
She had a rocky start but I was already smitten.
At day 2 the bad news started rolling in. If you want to read more about the details, read Not the Post I Wanted to Write.
The working diagnosis was that Eva had CHARGE Syndrome. She was blind, with micropthalmia in both eyes, and coloboma in her right eye; she suffered from auditory neuropathy disorder which means she was deaf; she had a missing corpus callosum which may or may not have seriously affected her development, and wider than normal sylvian fissures in her brain; she had a large atrial septal defect in her heart and a small PSD; she had trouble feeding and was almost exclusively fed through an NG tube; she also had low muscle tone.
Eva died at 10 and a half months old in February 2015. She had started making real leaps and bounds with her development and it looked like she would crawl in the next few months. A summer of no coughs and colds was letting her attack the world as she saw fit. Her death was unexpected and sudden. One day she had a cold. The next she wasn’t breathing.
Eva was a happy, funny, loving baby. She is missed by many, most of all me.