Ten Years Ago We Were Told His Disease Was “Not Compatible with Life.” They Were Wrong.
March 16, 2016
During our first ultrasound scan we were told there was a problem, the scan four weeks later confirmed a chromosomal anomaly, one or a combination of three.
We wouldnt do further tests as we decided it wouldn’t change our chosen course of action, to let our baby have the life and death that was his destiny without our intervention.
We went full term and had a normal vaginal delivery.
William, though small, did not present with many of the forecasted problems, and he didn’t die during or after birth. A blood test later confirmed Edwards Syndrome. After three weeks in a Special Care Unit we were despatched home and told to enjoy some time with him as ‘he will not survive, as Edwards Syndrome is a lethal condition, not compatible with life,” we were told.
Ten years and many, many tears later we have a delightful, charismatic and vocal little boy who needs 24/7 care and assistance to ENABLE him to attend school,short breaks,road trips and parties etc where he enjoys the company of children who have a range of disabilities from hardly noticeable to profound.
I have met many amazing parent-carers and bereaved parents in the last ten years, and my character has, for the most part, been shaped by them and my amazing son William, who appears to be NOT COMPATIBLE WITH DEATH!
The choice is yours….but whatever that choice be prepared to fight..for everything. Don’t take what the Dr’s say as gospel, research well or get friends and family to do so. Don’t focus on the negative factors, don’t believe statistics. Do ask for help, do accept you won’t always make the right decision.
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