Thursday, September 30, 2010

An Amazing Letter

On our CHD journey, I've had the opportunity to meet the most amazing women - my fellow heart moms. It is these women who have lifted me up, to be stronger, wiser and a better heart mom. They are there to answer my questions, listen to my fears and lend a shoulder to cry on (day or night.) One of these moms, Amy Bennett, wrote a courageous and heartfelt letter to her perinatologist - a perinatologist who did not give them HOPE for their son.

Amy's son, Bodie, like Zoe, was diagnosed prenatally with Hypoplastic Left Heart Syndrome (HLHS). Amy, like myself, did not receive any HOPE from her care provider. For those of you who do not know, my OBGYN called a week after I learned of Zoe's diagnosis...a week after I called his office and asked for a return phone call. When he did call, he jumped to the conclusion that I would terminate. He notified me that I had up to and including week 24 of my pregnancy to deliver Zoe. He said she would survive a short while and then pass. He told me that I would get to hold her and they'd "peform a nice service."

Little did he know, while I'd waited (impatiently) for his return call to discuss Zoe's diagnosis, he granted me seven days to think about Zoe's diagnosis and educate myself. With the help of Zoe's cardiologist, I chose HOPE. I chose to FIGHT for Zoe. I cannot imagine my life today had I not sought further counsel.

Amy's letter is just the beginning; the beginning of a huge movement to raise awareness and spread HOPE. The moms I've met on this journey are an inspiration and WE WILL MAKE A DIFFERENCE!

And so, a huge thank you to Amy, my fellow heart mom for her words:


  1. Thank you so much for sharing this letter Stacey - and for letting sweet Zoe be a part of the story. :-)

    Heart hugs,

  2. My comment turned into my next post on Gwen's blog.... you touched a nerve.... this is so where I am too... and I want to spread this HOPE very much as well. So, when I get a chance to finish my rant (add links to this and all) I'll be putting another post up on Gwen's blog. That's what I want her blog to be about... so this is good... I love this - to be able to share this- that I have something perfect for my next post.