Tuesday, October 30, 2012

The diagnosis

Disclaimer: I am not a doctor. This is simply my way of explaining what is going on with EVAN. Evan's Hydrocephalus is caused by Aqueductal Stenosis.

We all have a brain. (Well, most of us do) Our brains produce cerebrospinal fluid .  This fluid flows through our ventricles (vents) and in normal cases, it carries nutrients and proteins to the brain while carrying waste products away from surrounding brain tissue. It is created, it flows down, and out of the brain. No harm, no foul. BUT, for some children (Evan for example) this fluid is blocked by an obstruction in the vent. The fluid cant drain, so it builds up, the vents expand, and this expansion pushes the surrounding brain tissue to the edges of the skull. This fluid is produced daily, so everyday Evan's vents are getting bigger and bigger. The fluid has no where to go, but over. Over into the area where Evan's nice and spongy brain matter should be. At our first ultrasound on July 9th, his vents were 18mm on the left and 21mm on the right. By August 11th they were 23mm on the left and 28mm on the right. I cant recall September's measurements but at last measurement, on October 11th, the left was 28mm and the right was in the 40's. To put this into perspective, his vents should measure 10mm on both sides. Evan's are nearly 3 times larger than they should be on the left, and 4 times bigger on the right. Did I mention this is the good news???? Let me back track a little bit and explain how we got to the "good news" :)

When we were first told something was wrong, we were urged to do an amniocentesis  We were basically told, you need to decide now, because you are currently at 20 weeks along. If we need to terminate, we need to decide within the next 12-24 hours. TERMINATE?? I couldn't even wrap my head around that word. I was NOT going to terminate my pregnancy  I was living in fear that I would lose this baby due to what ever was causing this issue. How on earth could they think I would end my babies life. And then they explained it to me....
There are many causes of hydrocephalus. Spina bifida, down syndrome, and Dandy Walker Syndrome just to name a few. There are also other causes, and with these, the child is not expected to live outside of the mothers womb. Trisomy 18 is the word that stopped me dead in my tracks. Being a sped teacher is both a blessing and a curse. I knew exactly what this meant and I realized that while I wouldn't actively terminate my pregnancy  I had to be prepared for what ever this birth may bring. That his survival may very well be out of my hands. The doctor left mark and I alone in our room to decide what to do. After 20 minutes of back and forth, we both knew we had to do it. Now, I am the girl who cold cocked her doctor with a right hook at age 5, when he tried to give me my booster shot. Needles are not my friend. The nurse kindly asked that I keep my arms down and asked mark to stand back. The pain wasn't nearly as bad as the worry I had over what that test would tell us. We waited on pins and needles for those results. When the initial set of results came back negative for downs and the two defects that are fatal, I felt as though we had won the lottery. 9 days later we got the news that there were no chromosomal defects. The relief I felt that day was unlike anything I had ever experienced  It was like a ton of bricks had been lifted off of my shoulders. I sat on my mom's couch and cried tears of pure joy. Something was wrong with my baby, but it wasn't nearly as bad as it could be. In that moment, I truly felt blessed.

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