Wednesday, January 23, 2013

CDH Update



As many of you are aware, I am the only contributor to Papas of Preemies whose child was not a preemie. I’m not sure how I came across Joel’s blog but am so glad I did and that he allowed me to share our story. Not only do I have a supportive group of guys who have been in the NICU environment, but I’ve also made a great friend in Joel and look forward to continuing this long distance friendship for years to come.
    
Just recently some groundbreaking information came out about research for Congenital Diaphragmatic Hernia or better known as CDH to those who have faced this diagnosis. I thought it would be great to share this information and also some background on CDH. All of this information was gathered on the website from the DHREAMS Study which my wife, son and I are a part of.
     
If you are interested, I have attached the links to the study and the most recent information. It’s an honor to be part of Papas of Preemies, and my hope is that we reach as many struggling Dad’s as possible no matter what diagnosis landed their child in the NICU.
     
Fathers aren’t the best at showing emotion or admitting that they need help so we may never understand our true reach in this initiative. I recently saw an example of this when a Dad who I work with, reached out to me to talk about his situation. He explained to me that he saw my blog shared through LinkedIn and just wanted me to know that he had a similar experience with a different diagnosis and he understood what I was going through.
     
So I appreciate all those who have liked, shared or re-tweeted my blogs and hope that you will do the same with this information, so others can understand the letters CDH. It’s a devastating diagnosis, and if you face it, it may be the toughest thing your family will ever face, but know that there is support out there through formal charities or just a simple contact to another Mom or Dad who’s been through it.


Mark Brislin 
Papas of Preemies Contributor

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