Tuesday, October 5, 2010
"The purpose of life is a life of purpose" - Robert Byrne
The death of baby Ewan has hit so many in the congenital heart defect community very hard.
Like Sawyer, he was diagnosed with Tetralogy of Fallot, had Pulmonary Atresia and no visible PDA.
A grim diagnosis no mother should ever have to hear.
I remember the moment when Sawyer's neonatologist came into our hospital room while I was pumping for the first time after his birth. It was June 2. A beautiful late-spring afternoon in Chicago.
As she began to speak, I sat there in my hospital chair giving her my full attention as the quiet hum of the breastpump did its work. I don't remember much about that conversation except for the very last thing she quietly told us before leaving the room and giving my hand a tender squeeze.
"Full-term babies with this type of heart defect have a very poor prognosis. I'm sorry."
My heart sank, but we never gave up hope. Just as Ewan's mother, Kirsten, had done. She never gave up on that beautiful hope. Ewan inspired us all - on the days he made a stride and on the days he had a setback. We cried with Kirsten, we prayed with her. And now, we grieve with her.
This beast known as "congenital heart defects" continues to ravage families all over the world, every single day. There is no known cure, only quick-fixes - and it is the number one birth defect and leading cause of infant death in the United States. These numbers are more than startling, they're horrifying.
It's easy to make a pledge to change these statistics.
What's not easy, is getting out there and sharing the most personal details of your story with a total stranger. All in an effort to hold on to the hope.
I want to thank Kirsten for sharing Ewan with all of us. I want to hug her and cry with her. But most of all, I want her to know that I'm not giving up on hope.