Inspiration for "Canaries in the Coalmine"

During a routine second trimester ultrasound of our second baby, we received life changing news. Our precious baby boy, who showed no previous sings of complications, was collecting large amounts of fluid around his face and neck, fluid that would likely cut off his airway and ability to swallow. The doctors advised us to abort as they assured us that his rare condition almost always indicates more serious issues and syndromes. When we asked them to explain (and spell) his diagnosis, they simply told us to look up lymphangioma online.

From that moment, we started a quest to learn all we could about this incurable condition also known as cystic hygroma. We scoured research from across the globe and spoke with experts around the country. On June 5, 2008, Crewe was born through a risky, rare surgery known as an EXIT procedure. His airway was successfully secured while he was still connected to me and breathing through the placenta.

Since Crewe was born he has received a trachestomy and been diagnosed with hypotonia (low muscle tone) and severe food allergies.

Our search for answers and treatment options during the past two years has put us on a path that is changing not only our little guy's life, but our whole family's life... for the better!

Crewe is our little canary and has alerted our family to so much valuable and life altering information. Canaries in the Coalmine is a place where we will record the ah-has we encounter during this journey.