Tuesday, April 21, 2009

The CDH reality

The hard reality of CDH is that 50% of these children don't survive. A baby that survives birth with CDH has a hard fight in front of him/her. The road to recovery is riddled with obstacles that these babies bravely fight to overcome. Sometimes the obstacles are too great.

I read and follow as much as I can about other families struggling with, coping with, and overcoming CDH. Inevitably, I read stories of CDH babies earning their wings. I sometimes feel guilty for how sad I get for these parents and their loss. My child survived this horrible thing so I think I feel guilty because my sadness is nothing compared to what they are dealing with and how can I be getting so upset when they are the ones going through the nightmare. I am mad that they have to go through this. I am frustrated that beyond a small community of families and friends, hardly anyone knows about CDH.

I think about CDH everyday. I think about ways to spread the word. I think about ways to offer comfort to families dealing with the pain and loss of CDH. I think about ways to provide support to families that are just learning about CDH. But I know that thinking is just the start of making a real change in getting the word out about CDH.

Today the CDH community is saddened by the loss of Angel Kaden Alex Kuehl. He fought for 17 days and is now in heaven with many other CDH angels. I wish more than anything that his mom and dad can find peace with this loss. I know my prayers and thoughts will be among many.
Posted by Sarah and Barry Mayer at 7:31 AM

2 comments:

  1. Gabi's JourneyApril 22, 2009 at 7:38 AM

    Hi Sarah,

    I just found your blog.. and I love to see pics of your adorable Jaxson... He is soo CUTE! I wanted to say thanks for reaching out to me on CHERUBS.. it helps to hear a beautiful story like yours. Our journey and Gabi's will be here very soon and I need as much happy stories as I could find. It hurts me so to hear about soo much loss. Thanks for listening!
    Joanna (CHERUBS)

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  2. Sarah and Barry MayerApril 22, 2009 at 12:26 PM

    I cannot say enough about how important it was for me to talk to other CDH parents when I was in your shoes, just beginning the journey.

    It hurts me too to read about the loss of these beautiful babies to this horrible defect. I have the utmost respect for the amazing parents that travel the road of loss of a child. It's just not fair, but unfortunately it is the harsh reality of this defect.

    I'm always here Joanna and will be thinking and praying for you, your family and little Gabi!

    Sarah

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Welcome Jaxson's CDH Journey

Jaxson is a CDH survivor and this blog follows his story and our ongoing efforts to spread the word about CDH.

Jaxson was diagnosed with LCDH at our 20 week ultrasound. His stomach, intestines, spleen, apendix and left lobe of the liver had all herniated into his chest cavity. We were told his chances of survival were less than 50% and that he had an 80% chance of going on ECMO.

He was born at Hospital of the University of Pennsylvania and transported next door to CHOP on 5-19-08. He did not go on ECMO, had his repair on 5-23-08, came off the ventilator on 6-6-08, breathing on his own by 6-12-08 and was discharged after 37 days in the NICU.

He is our CDH rock star!