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Thread: New Facebook CDH Groups

  1. #1

    New Facebook CDH Groups

    NEW FACEBOOK CDH SUPPORT GROUPS:

    CHERUBS has created 2 new private Facebook groups for CDH Families:

    For Grieving Families - https://www.facebook.com/groups/grievingcdhfamilies/

    For Survivors & Families - https://www.facebook.com/groups/survivorscdhfamilies/

    Because this group is not filtered well, and because families of survivors and grieving families want their own safe places to talk, we created these 2 new groups.

    They will NOT replace our forums here.

    YOU MUST BE A MEMBER OF OUR FORUMS (in good standing) to be approved to join one of the other 2 groups. Not a member? Join for free at http://www.cdhboards.org/

    Families only please.

    Rules will be posted to keep out any drama or negativity and we will have medical professionals in our groups to keep them safe and free from the awful medical advice so often found on FB.

    Please be patient with us as we vet members into these groups as it may take a little time. Make sure your forums profile is up to date and we can approve you much quicker.

    It is our goal to create safe, private and responsible places of CDH support for families on Facebook. We hope that you will join us!
    Mom of Shane (1/28/93-9/11/99) LCDH x6 and multiple complications and birth defects.

    Founder and President of CDH International.

    Executive Director of:

    CDH International USA
    CDH International UK
    CDH International Canada
    CDH International Switzerland
    CDH International Netherlands
    CDH International Singapore
    CDH International Hong Kong

    Messages may be answered by CDHi Team.

  2. #2
    When Dawn says this group is not filtered, she means you can still happen upon threads for both survivors and angel families here on the forums. So many members have mentioned the ease of facebook and we are trying to keep with the times, but please know this is not a replacement for the forums. The forums have been around a long time and we still want families to use them....in my opinion they are safer. These groups are one for survivors to share and one for grieving families to share. At this time, we will add all expecting families or babies currently in the NICU once the NICU journey is over, for we don't want to be adding and removing in these groups if we can help it. We are making sure members accounts are in good standing and families are added to the correct groups.

    Please make sure profile information is up to date and approval into these groups will happen quickly.

    If you have any questions please let us know.
    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. #3
    Hello! When I click the link for the survivors, it tells me the content is temp. unavailable. This happened all yesterday and now this evening. I can click and be directed to the grieving families link okay though. Anyone else? Thanks
    From Wasaga Beach, ON, Canada and the very proud mother to Carson, Marek and CHERUB Sasha. Sasha was born May 27th 2014 and came home from SickKids hospital September 3rd 2014. She had a bumpy road to recovery but has come home after receiving a fundoplication and g-tube surgery. Came home working on feeds - happy to say she is not using her g-tube anymore and it should be removed soon. Hoping to wean meds also and continue to see improvements in her gross motor skills. Very lucky, very thankful.

  4. #4
    https://www.facebook.com/groups/survivorscdhfamilies/

    I will look into Louise. I am not sure what is going on. I need to try from my husband's facebook account and see what happens (since he is not a member of the group yet)...not sure. Will let you know.
    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

  5. #5
    That link worked. I also received your invite and am just waiting approval. Thank you very much
    From Wasaga Beach, ON, Canada and the very proud mother to Carson, Marek and CHERUB Sasha. Sasha was born May 27th 2014 and came home from SickKids hospital September 3rd 2014. She had a bumpy road to recovery but has come home after receiving a fundoplication and g-tube surgery. Came home working on feeds - happy to say she is not using her g-tube anymore and it should be removed soon. Hoping to wean meds also and continue to see improvements in her gross motor skills. Very lucky, very thankful.

  6. #6
    Just added you Louise.

    The groups privacy are marked secret, which is why I thought maybe the link was not working. I am learning all this facebook things as I go, LOL!

    So I sent you an invite, knowing you would for sure see it that way.

    Should be set to go.
    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

  7. #7
    If you are unable to see the new groups on facebook. Message me your email address and I can send you an invite to join one of the pages.
    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

  8. #8
    https://www.facebook.com/groups/grievingcdhfamilies/

    I can't access that. Facebook account to add would be : https://www.facebook.com/ourfamily.wilson

    Thank you.

    Sean

  9. #9
    With the group marked as secret, I think it won't let members find it and I have brought that up with the boards. I did send you an invite Sean to the email we have on file for you here at CHERUBS to join the group, hope that works.
    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

  10. #10
    The list to join these groups is getting long! Please make sure you are a member of CHERUBS. You can join at www.cdhboards.org.

    Please make sure to fill in all fields, this includes all the questions in regards to your cherub, for so many of you are leaving out dates and city/town of birthplace.

    At this time we are only adding members that have a complete and up to date profile. If you have any questions, please email the CPAB at cpab@cherubs-cdh.org.

    If you have requested to join these groups and have not heard back from us, please see your other folder on facebook, for you will have an email from either Dawn or I on why the request was not approved and what info. we are missing from you.


    To make changes to your profile or to add missing info., please log-in and go to Settings in the upper right hand corner. Click on Settings, then go to Edit Profile on the left hand side of the screen. From there your profile form will pop up and you can make the necessary changes. Then hit submit changes at the bottom of the screen. If you have updated info., please email the CPAB that you have done this so we can get you added to these groups.

    Thank you!!
    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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