DAVID'S FIGHT (w/Trisomy 18): The Company Meeting

Friday, February 10, 2012

The Company Meeting

I was a late arrival, but instead of sneaking to the back, I kicked the door open (in my mind) walked in with my head held high and smiling ear to ear. There were whispers throughout the front rows. As I approached the center row, I noticed what the whispers were saying "what is it?!" "well" "what is it?!"

I held up that black and white sonogram image like it was a golden ticket to Willy Wonka's place. My wife let me hand pick it - the one that had an arrow with the word "boy!" beside it. "It's a boy!" I semi-whispered back. I was going to be the father of three boys and two girls!

http://www.davidandtrisomy18.blogspot.com/2011/02/first-sonogram.html

Today, I face walking back in to that same meeting. This time I'll probably go in early and sit down in the back. To say that life goes on would be a very real and true statement. Life does go on, but now as I anxiously await 3pm to roll around I can't help but to remember my entrance last year.

When we found out the diagnosis of David, I told God that I would go to the ends of the earth and walk through whatever he has ahead for me, but "Don't you dare back out on your promise to never leave me!"

So Father, just as you have escorted me through these times, consider this an open invitation to my company meeting today. Amen.

DEFINITION OF TRISOMY 18 (EDWARD'S SYNDROME)

Edwards Syndrome : Edwards Syndrome (Trisomy 18) is a chromosomal abnormality where there is an extra chromosome present in every cell of the body. This is an example of where “the more the merrier” is not true. This extra chromosome means that every cell has extra information encoded into it. The extra information causes confusion in the way that the cells are formed and results in the potential malformation of all of the body systems. Sadly, this condition is considered "not compatible with life". Just like with Down's Syndrome (Trisomy 21), there is a wide range of how this condition will play out (what the doctor's will refer to as your child's phenotype). Unfortunately because there is more information encoded on the 18th chromosome, the severity of this condition is greater than that of Down's Syndrome. Current studies show that while 1:1500 children will be diagnosed prenatally with trisomy 18, only half that number (or 1:3000) will be born alive at full term. Of those who survive to birth, only half will make it to two months of age, and only 10% will survive to their first birthday. Children who live can be an important part of their family and community, but are profoundly developmentally delayed.