March 31, 2012

Congenital Diaphragmatic Hernia Awareness Day



Today is Congenital Diaphragmatic Hernia Awareness Day. The following are some CDH statistics from the Breath of Hope website.
  • Every day five families in the United States are given the diagnosis that their child will have CDH. 
  • The survival rate for these babies is 50 percent.
  • CDH is as common as spina bifida and cystic fibrosis and more common than congenital muscular dystrophy, yet 98 percent of families whose babies are diagnosed with CDH have never heard of it until diagnosis.
  • These infants require the most advanced medical care and cost into the millions of dollars to treat.
  • Each day 2-3 infants in the United States will die of CDH. 
  • There is no known cause.
I think of Anne Marie every day, but I don't necessarily think of CDH. When I think of her I do think about her in the hospital and being in Dallas with her, but mostly I just remember her beautiful, sweet face and how much joy she brought to us in spite of CDH. I see her pictures throughout our house and the littlest things can make me instantly think of her -- a smell, a song, the weather. I think of her when I rock and sing to Oliver at night. I always sing the same song over and over -- You are My Sunshine. It's the same song I sang to Anne Marie in her room. I remember those nights when it was just her and me. It would be late at night and the nurse would quietly step out of the room. The room would be dark with just dim lights from the machines. I would rub her little head and sing over and over You are My Sunshine. I remember being at home with Oliver when he was only about three days old. I was standing at the dining room window looking outside and jiggling him to sleep. I started singing to him and could only get two words out before the tears came -- remembering singing to Anne Marie.

I think a lot about how I wished I had done "more" for her after she died. I have read numerous blogs and stories about parents who start marathons and foundations in memory of their children. When we came home from Dallas I was thankful just to make it through one more day -- I couldn't figure out how other parents had the strength to do such big things. But I wished I had had that strength -- to do something more lasting for her and to help fight against the terrible disease that she fought so hard against. Something so that she and her fight wouldn't be forgotten, and so that other parents wouldn't have to do the seemingly impossible -- bury a child. But I am thankful for the many parents who have helped raise awareness for CDH, for organizations like Breath of Hope, and for the many doctors who work hard to treat and find a cure for CDH.



Today, like always, I am thinking of Anne Marie. And I am remembering how strong and brave she was. I am remembering the little smiles she would give me and how she would stare up at me and lock eyes with mine. I am remembering her doctors who fought so hard for her and never gave up on her. I am thankful for God's sovereignty in our lives and that He chose us to love her, that He gave us the blessing of being her parents. We love and miss her more than words can express.



Here is a short video clip from a past CDH Awareness Day:

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