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The story of our precious little girl's 17 months of life with Trisomy 18 (July 4, 2010 - December 15, 2011) and of us, re-learning to live "after Lilly."
"I will praise you for I am fearfully and wonderfully made ...." Psalm 139:14
Showing posts with label incompatible with life. Show all posts
Showing posts with label incompatible with life. Show all posts

Monday, March 9, 2015

The Geneva Declaration - End the label "Incompatible with Life"

Words are powerful. 

"The pen is mightier than the sword" (Edward Bulwer-Lytton, 1839).

"There is one whose rash words are like sword thrusts, but the tongue of the wise brings healing." - Proverbs 12:18

"Death and life are in the power of the tongue . . ." - Proverbs 18:21

"Gracious words are like a honeycomb, sweetness to the soul and health to the body." - Proverbs 16:24

"Incompatible with Life."


Our Lillian Eva - shortly after her 1st birthday (July 2011)
Babies with Trisomy 13 and 18 are known in the medical field as being "incompatible with life."  87% of parents are told this about their babies, even though survival rates are between 5-40%.

I consider us blessed that we never were directly told this about Lilly.

That doesn't mean all the doctors we encountered had a positive outlook for Lilly.  She was refused treatment at times.  We got to hear things like it was "unethical" to treat her because she was going to die soon.

Imagine that at the first ultrasound your parents had of you, or when you were examined at birth, you had the words "this baby is INCOMPATIBLE WITH LIFE" pronounced over you.

It is a death sentence.  Discrimination in the extreme.  Who would treat a baby that is "incompatible with life?"  What would be the point?

photo credit - all photos today - Steve Rubin Photography
This coming Wednesday, March 11, 2015, there will be a global initiative to end the label "Incompatible with Life."  This presentation will occur at the United Nations in Geneva, in association with the European Centre for Law and Justice.

The Geneva Declaration on Perinatal Care states:

"As medical practitioners and researchers, we declare that the term 'incompatible with life' is not a medical diagnosis and should not be used when describing unborn children who may have a life-limiting condition. 

We acknowledge that there exists no medical necessity to terminate such pregnancies in an otherwise healthy mother. 


We fully support the development of perinatal hospice services for families who are told that their unborn children may not live for very long in the womb or after birth."



As the parent of a Trisomy 18 baby - that was such a blessing - I signed this Declaration here:  http://www.genevaperinatalcare.com  (It only takes about a minute to do!)

Getting rid of this label will undoubtedly save lives as there would never be any hesitation in treating them.