Stay Connected

Results 1 to 2 of 2

Thread: Attention Grieving Parents

  1. 11-30-2011, 12:43 AM #1
    NeilRubenstein
    NeilRubenstein is offline
    Senior Member
    Join Date
    Feb 2011
    Posts
    195
    Blog Entries
    5

    Attention Grieving Parents

    Our 2011 National Children's Memorial Day tribute page will go up on December 1st. We will list all cherubs lost to CDH and a virtual candle will be lit in memory of your child. BUT WE NEED YOUR HELP.... you have until November 30th (TOMORROW) to make sure your membership form at CHERUBS is up-to-date, your cherub's name, dates and status are accurate. http://www.cdhforums.org/ If you have trouble logging on to check, e-mail us at login@cdhsupport.org

    We CANNOT do it for you, we have too many members and too many projects right now and we can't take requests by e-mail, message, posts, etc. Just 2 of us are doing this so we just can't, I'm sorry. WE DON'T WANT TO EXCLUDE ANYONE SO PLEASE GET THIS DONE!!!!!!! Please also while you're logged in, double-check your contact info too so that our holiday cards don't bounce back (that costs us $$$). Thank you! http://www.cdhforums.org/

    I know if you are seeing this you are probably up to date, but I want to make sure everyone has an opportunity to participate.
    Neil Rubenstein has been married since 2003 to his wife, Amy. He has two CDH survivors. His 1st CDH survivor (Aidan) was born in June 2010 after being diagnosed at 37 weeks. Aidan had surgery to repair his hernia when he was 4 days old. His surgeon discovered at that time that Aidan had no diaphragm at all, all his organs were in his chest (except for his liver), his heart had been pushed to the left side by his stomach, and he had two spleens (apparently not uncommon). Even with all this, Aidan did not need ECMO and was only in the NICU for 29 days. Aidan had a follow-up procedure at 13 months old to close up an abdominal hernia that his surgeon created to give his organs room to grow once she moved them all back to their proper location in his abdomen. His second CDH survivor was born on September 10. Brody had his hernia repair at 3 days old. All of Brody's organs except his liver and stomach were in his chest and his hernia was repaired using a Gortex patch. He will need the same follow-up surgery at around 12 months as Aidan.
    Reply With Quote Reply With Quote
  2. 11-30-2011, 11:57 AM #2
    Chris and TracyMeats
    Chris and TracyMeats is offline
    Administrator Chris and TracyMeats's Avatar
    Join Date
    Sep 2007
    Posts
    6,814
    Thank you for posting this Neil!
    Tracy - mom to Ian, LCDH diagnosed at birth, 4/3/04. Ian was born at 36 weeks, spent 53 1/2 days in NICU, 7 days on ECMO, surgery was on day 5, 29 days on a vent, 23 days was an oscillating vent, 546 days on oxygen. Inguinal right and left hernias and undescended left testicle surgeries were done on day 48. Currently has heart related medical issues and exercise induced asthma, but is one happy, happy boy!! Also mom to Cole - 13, Shane - 9, and Toby - 4. CHERUBS Parent Advisory Board Member and Co-Chair, Volunteer Co-Coordinator, and Wyoming State Representative.
    email: tmeats@cherubs-cdh.org
    Reply With Quote Reply With Quote
« Previous Thread | Next Thread »

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  

Forum Rules