Saturday, March 26, 2011

A CDH Survivor

I received this incredible message from a CDH survivor. She is 23 years old and was the first child in Pittsburgh to be placed on ECMO. She is currently training for a half marathon although she only has one lung. I feel so blessed to meet such extraordinary people!
Dear Lisa and family, 

I came across your blog somewhat randomly this evening while browsing through some other blogs, and admittedly, your very cute logo/badge made for Ramsey caught my eye and I read on! I am so happy that I did, though, because I soon found out that your adorable son is fighting a CDH diagnosis- the same condition that I was born with 23 years ago. I was born in the winter of 1987 and  was rushed to Children's in Pittsburgh, immediately was taken into surgery to rearrange my organs, and was the very first child in Pittsburgh to be placed on ECMO.  I stayed for two months in the NICU and came home for the first time on Valentine's Day!

I am so incredibly happy and thankful to see that Ramsey is doing well right now, and I just wanted to write to let you know how very touched I am by your story and your blog. I have never met anyone else with CDH, and as you can imagine, the survival rates then were much slimmer than they are today. I am doing well now, thanks to the extraordinary care at Children's. I now live with just one lung and only had a few diaphragm repairs when I was little, but other than that, I am  healthy! Know that there is a light at the end of the tunnel - your little boy certainly seems to be a fighter!

In any case, I just wanted to let you know that your story is amazing for me to read today and makes me think that there is certainly a reason for everything - including my sleeplessness this evening that led me to reading your blog! 

Thank you for sharing your story, and I hope and know that Ramsey will continue to grow stronger with each day. I will keep him and your family in my prayers!



  1. I love that you heard from an older survivor. most of time Caleb is the oldest. some day we all must meet.
    -Stacy Novak

  2. What a wonderful story. It has to make you feel so good. God Bless her for her blog, and now we know that Ramsey can have a great future ahead of him...If only all the CDH babies could have the same now, wouldn't it be great? PRAISE GOD for being with all of them.

  3. Erika,
    Thank you for sharing your story, and good luck to you in the marathon. You have given great hope for all with CDH.
    Now along with Ramsey and other CDH children, we are praying for Clara born 3-23-11 on ECMO.
    God bless,
    Ramsey's Grandma Mary

  4. Wow, how cool is that! Thank you for sharing Erika! As the mom to a CDH survivor, it means so much! I have gotten into contact with a couple of other CDH survivor/adults. One just had her own healthy baby with no pregnancy complications!!!
    Thanks again,
    Mom to Dakota 12-25-2008
    RCDH/ECMO survivor

  5. Lisa,

    I was on call on labor and delivery at West Penn last night and was happy to see Ramsey's birth announcement. (It is posted at the nurse's station.) I continue to pray for you and your family and look forward to hearing more good news.

    Annelee ("Dr. Boyle")