DAVID'S FIGHT (w/Trisomy 18): Tangible Hugs

Wednesday, June 8, 2011

Tangible Hugs

Photo taken by: Lacy Basford! Divine Appointment! Bless you!!!

Last night we ventured out of the house for the first time since the hospital. We were blessed to have each one of our children create stuffed animals in memory of baby David. What a tangible way to remember him and be comforted. This was such a therapeutic time for our family.

I present to you...our bear family:

Baby David's Bear
(with audio of David's Heartbeat at the touch of a paw)

Andrew's Gator Bear
(Heather picked this shirt our for David to wear home if he was too small.)

Joshua's (Reminds us of Allen)

Destiny's (she has a yellow belt in tae kwon do)

Lexi's (because he was pretty cool and had big feet)

This healing moment was provided by the greatest company to work for in Gainesville!!! -
Charles Perry Partners, Inc.

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.