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Thread: New Facebook CDH Groups

  1. #11
    What about women pregnant with babies who have cdh?

  2. #12
    https://www.facebook.com/groups/2243563143/ is the group you can post to Kim. Or feel to use our main page at https://www.facebook.com/cdhsupport
    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

  3. #13
    All of the Facebook Support Groups have been moved to secret, therefore they no longer can be found in search menus. This privacy setting gives our families a safe place to talk and ask questions. We had to do this, for the requests were getting out of hand and many people had not been affected by CDH or were not members of CHERUBS.

    If you mark "yes" to join our facebook groups upon registering, you will be sent an invite to join. These are sent by facebook and will come as a facebook notification to your inbox. However, they will show the cherubs volunteer that sent them. Right now, they may read from Tracy Meats and the subject line be, Tracy Meats wants you to join.... If you do not see an invite in your inbox, do check your spam/junk folders. At anytime you have questions or want an invite sent and you are a registered member of CHERUBS and your profile is up to date, please email tracy.meats@cherubs.org.

    We now have 4 groups. At anytime you need to be added to another group, please let us know. You can email me or send the CPAB a message at cpab@cherubs.org. These groups are more active than the forums here.

    Our groups our as follows:

    CHERUBS Main Support group - it includes all members
    CHERUBS CDH Survivor and Family Group - it includes survivors and families once the NICU journey is over
    CHERUBS Grieving Group - this groups is a group just for our grieving families
    CHERUBS Survivor Group - this group is solely for survivors, teenagers that request to join, we must get parents permission.
    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

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