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One of the phrases commonly told to families just given a Trisomy 18 diagnosis is that the condition is incompatible with life. Not only is this one of the least helpful things to tell a parent of a newborn, but it is also inaccurate.
I am not going to wax philosophical about a lifetime being just as valid whether it is a second or one hundred years (even though that’s true) or step onto my soapbox and ask why some medical professionals think they are the end-all in knowledge (because I certainly wouldn’t do that) or how completely lacking in compassion it is to utter this phrase to a parent (because everyone is compassionate at the birth of a child, right? *cough*).
But seriously, Trisomy 18 is not incompatible with life. Sure, there are challenges, and there are children who live very short lives. But a life is a life, you know. I can think of a person of two in history who I consider incompatible with life, and I’m sure you can, too. And not one of them had or has Trisomy 18. But I would never say this to ANYONE. And the fact that there are children with T18 who live happy, loving, and even healthy lives demonstrates this all the more.
well said!
ReplyDeleteZane is proof of the validity of life. Every time I see his photo I see the beauty of life.
ReplyDeleteNo one knows God's plans; we play the hand we are dealt.
I wosh Zane the best.
The concluding statement of 12-year American major national study of interventions on children with trisomy 13 and 18 just published yesterday:
ReplyDelete"Because we are currently unable to identify which children might be long-term survivors, universal application of the term “lethal” to the diagnoses of trisomy 13 and 18 is not appropriate."
It is a major victory for the trisomy 13/18 community!!
He certainly looks happy! What a little star. A life is a life - very true.
ReplyDeleteVisiting from the Challenge. Nice to meet you!
so true, i had children that were born with severe handicaps---they were not expected to live very long at all--the oldest child lived to 17---only God knows---wonderful post
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