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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

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:  (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.


  1. Signing this beautiful declaration!! March 11th is the day our Daddy died. Wouldn't it be wonderful if something this life affirming began on that date? <3

    1. Thank you for signing! And what a beautiful thought about your Daddy.

  2. The link is giving me a 404 error? I will try to Google it but try to fix that link:) Lily is so lovely and such a blessing to many. I agree that the term should be abolished I was in a support group for grieving family and there was a mommy who heard the words incompatible with life and had an abortion at the last possible minute, here in CA that is 20 weeks. She seemed extremely broken and I believe she would of made the right decision to give that baby all the life God had created her for if it was not for those words.

  3. I reset the link - hoping it works now! That's sad about the mom in your support group. I can't tell you how many people I know or have heard that their baby had something awful but then the baby was born perfectly healthy! Ultrasound is good - but not perfect and certainly not to be totally trusted.

  4. Yes it works now!
    I totally agree We are one of those families! Our Jadon was to have hydrocephalus and horrible brain damage. We were told to terminate. He is now our wonderful 10 year old. He is clever, smart and funny. He has dyslexia, can you imagine a world where all the kids with dyslexia were aborted because their brain did not look the same? We would be a world lacking many great minds!

    1. Oh my goodness! Jadon looks just perfect - that's hard to imagine. It's horrifying to think of all the babies that were aborted for having problems that really did not have them. And I agree about dyslexia - some of the smartest, wisest people I know have it. :)