Thursday, March 5, 2015

Trisomy Awareness: UNCONDITIONAL (Day 5)

MARCH IS TRISOMY AWARENESS MONTH

Share on the fb page, TrisomyFamilies, and their blog, support4trisomyfamilies.blogspot,  And HASHTAG ‪#‎trisomyfamilies‬ ‪#‎trisomyawareness‬

Today's key word is UNCONDITIONAL ......


When I found out I was pregnant ..... I was so excited.  Trilled.   I couldn't have wanted that baby more!  Several miscarriages, years of TRYING ...... and I was finally pregnant....  and it was FINALLY sticking ........ I had such ....


Then it became obvious that something was wrong.   Every ultrasound showed - based on size - a due date pushed further back.  I was due March 17th, and by the end of it all ....  it was almost into June.  Testing was done.  Amnio.  Results came in ......   Mosaic Trisomy 16.
 Labels didn't matter.

This was MY baby.

He moved inside me.

He waved for ultrasounds....

He was proud of being a boy (as he waved his junk around during ultrasounds) .....

He was MY baby!


I didn't care how long I would have with him - and I was told it would be none at all or very short.  They wanted me to terminate, I said there was NO WAY I would.....  because.....


13 years later .......... and I am still loving him unconditionally .....



Noah has Mosaic Trisomy 16.  Trisomy 16 is not compatible with life. There are zero known cases where a child with Trisomy 16 has survived, infact, most pregnancies resulting in a Trisomy 16 baby end before the first trimester and is said to be the leading cause of miscarriage (according to some literature.) There are less than 100 known cases world wide of surviving children with Mosaic Trisomy 16.  When Noah was born in 2002 it was around 35.  The advice given to parents who find out about this diagnosis during pregnancy is to terminate.  That was NOT our choice.  We were told he wouldn't live, we were told he wouldn't come home.  He wouldn't even survive the pregnancy.  We were told that IF by some MIRACLE he came home, he would be so mentally and physically delayed it "wouldn't be worth it" .... and yet, my son, who has Mosaic Trisomy 16, is 13 years old.  He is beating the odds because we didn't listen to what they medical community said and we trusted our journey.  I had to prepare myself for the chance he wouldn't make it, but I had such high HOPE that he would.  He shocked and amazed everyone, and he continues to!  He is The Boy Who Lived! There are a lot of Chromosome abnormalities.  They are not limited to Trisomies.  There are additions, deletions, and multiple changes in the Chromosome make-up.  Educate yourself!!  Ask me questions about our journey!  We love telling Noah's story! 

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