Monday, April 9, 2012

Breaking the Silence

Six months ago today, our daughter Joan Louise was born with her mother’s dark curly hair and her father’s long legs, but without a heartbeat.  Halfway through the pregnancy we discovered through routine tests that Joan had a rare chromosome disorder called Trisomy 18.  We were devastated by the news and the reality that our daughter would most likely die before or shortly after birth.  But as parents, we felt that it was our purpose to support Joan for as long as she was fighting to be with us.  

Ours is a very different journey than most new parents. 

It is an isolating experience, since most people will never experience what we have.  It is something that most people don’t talk about or are not even aware of.  There are many blogs about infertility, miscarriage, stillbirth and infant loss.  But it is difficult to find any about continuing a pregnancy with a life-limiting prenatal diagnosis. 

I feel that it is time to break the silence. 

With the extensive technology and prenatal tests that exist today, it is increasingly common to diagnose fetal disorders early in pregnancy.  Unfortunately, there are many conditions that the advanced medical community still cannot fix.  Commonly, the solution offered is to terminate pregnancies with an adverse fetal diagnosis. 

In sharing our story I hope to bring awareness that there are other options, and there is support out there.

I hope to be a voice for others who experience similar circumstances, and to let them know they are not alone.

This is one of the many gifts that our daughter has brought me.  She has given me the courage to speak out and share our story in the hope of helping others.  Joan continues to change my life every day. 

Though her life was brief, little Joan touched many. 

Amazing the impact one small life can have…