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Thread: Identifying Genes Which Cause CDH

  1. #11
    Sounds interesting...is there much involvement after the blood drawing.

  2. #12
    They let us know that they had received the blood samples and that was the last we heard from them except we do get a yearly newsletter.
    Elaine- mom to Kristin 22- LCDH- nissen- ASD- oxygen till 2 1/2- g-tube till 4 1/2- bowel obstruction at 14 yrs old- only one lung. Also mom to Brittany 18- no CDH just 2 mths premie.

  3. #13
    I have been reading this thread and re-reading it.
    Today I called Meaghan and is amazing.

    She is going to send us information and a blood kit for when we have Shelby's blood drawn again and I hope it is no time soon.
    I asked her if they were interested in other families having CDH babies and she was like YES.

    Her number again-617-726-0828. If you are interested- DEFINETLY call her and she will explain everything.
    They are doing AMAZING things and I am so happy this thread is here.
    This can do so much for reasearch on CDH.
    Stephanie (Shelby's Mom LCDH 7-10-06)- ECMO 7 days- 2 DH repairs- hital hernia repair- Cliff Lip repair- Nissen and Mickey button. Shelby is eating and drinking by mouth now!!! THIS IS FANTASTIC!!!!! Mom to Lexi 8- Morgan 6 and Taylor 5. Blessed to have our little butterfly and our beautiful girls. [url]www.youtube.com/cdhsupport[/url] - Shelby's Journey [img]http://i258.photobucket.com/albums/hh257/gracebutterfly/CDHAwarenessRibbonShelbysmall.jpg[/img]

  4. #14
    I can't spell when I get excited.
    I meant to write---This can do so much research for CDH and the more families that are involved----the better.
    Stephanie (Shelby's Mom LCDH 7-10-06)- ECMO 7 days- 2 DH repairs- hital hernia repair- Cliff Lip repair- Nissen and Mickey button. Shelby is eating and drinking by mouth now!!! THIS IS FANTASTIC!!!!! Mom to Lexi 8- Morgan 6 and Taylor 5. Blessed to have our little butterfly and our beautiful girls. [url]www.youtube.com/cdhsupport[/url] - Shelby's Journey [img]http://i258.photobucket.com/albums/hh257/gracebutterfly/CDHAwarenessRibbonShelbysmall.jpg[/img]

  5. #15
    I received a copy of CDH News from the CDH study Research Staff and it was wonderful.
    They are all angels walking on this earth.
    If anyone is interested-you should most definetly give Meaghan a call. It is so very much worth it!
    Stephanie (Shelby's Mom LCDH 7-10-06)- ECMO 7 days- 2 DH repairs- hital hernia repair- Cliff Lip repair- Nissen and Mickey button. Shelby is eating and drinking by mouth now!!! THIS IS FANTASTIC!!!!! Mom to Lexi 8- Morgan 6 and Taylor 5. Blessed to have our little butterfly and our beautiful girls. [url]www.youtube.com/cdhsupport[/url] - Shelby's Journey [img]http://i258.photobucket.com/albums/hh257/gracebutterfly/CDHAwarenessRibbonShelbysmall.jpg[/img]

  6. #16
    You got what from who? How do we get this? Is this CHERUBS related?
    Mommy to Shannon Elizabeth (01/16/07-01/19/07 LCDH and HLHS) Peanut Shelbe (miscarried 9/23/07 @ 8 weeks- due 4/10/08 ) Gracie Kathleen & Lily Anne (8/28/08 Blessings from their big sisters!) Shannon's Website! [url]www.shannonelizabeth.virtual-memorials.com[/url]

  7. #17
    I received the newsletter from the CDH Study Research Staff from The MassGeneral Hospital for Children and Children's Hospital Boston. It is called CDH News. They are conducting CDH research.
    The newletter is wonderful.
    CHERUBS web site is listed in the newsletter as a support group. VERY COOL!!!!!!CHERUBS is the first support group listed.
    They are sending a blood draw kit for us to give our blood samples. We will wait until Shelby needs blood to be drawn and then send in ours and Shelby's.
    I cannot tell you if they are taking parents blood of non-survivors.
    That would be a question for Meaghan and she is amazing, as are the doctors involved in this research.
    Her number is listed in this thread.
    Hope this helped.
    Stephanie (Shelby's Mom LCDH 7-10-06)- ECMO 7 days- 2 DH repairs- hital hernia repair- Cliff Lip repair- Nissen and Mickey button. Shelby is eating and drinking by mouth now!!! THIS IS FANTASTIC!!!!! Mom to Lexi 8- Morgan 6 and Taylor 5. Blessed to have our little butterfly and our beautiful girls. [url]www.youtube.com/cdhsupport[/url] - Shelby's Journey [img]http://i258.photobucket.com/albums/hh257/gracebutterfly/CDHAwarenessRibbonShelbysmall.jpg[/img]

  8. #18
    Do I call her to get this newsletter?
    Mommy to Shannon Elizabeth (01/16/07-01/19/07 LCDH and HLHS) Peanut Shelbe (miscarried 9/23/07 @ 8 weeks- due 4/10/08 ) Gracie Kathleen & Lily Anne (8/28/08 Blessings from their big sisters!) Shannon's Website! [url]www.shannonelizabeth.virtual-memorials.com[/url]

  9. #19
    Yes- I would call Meaghan and tell her you are interested in the newsletter. She emailed it to me, so I would think she would be more than happy to do it for you.
    Stephanie (Shelby's Mom LCDH 7-10-06)- ECMO 7 days- 2 DH repairs- hital hernia repair- Cliff Lip repair- Nissen and Mickey button. Shelby is eating and drinking by mouth now!!! THIS IS FANTASTIC!!!!! Mom to Lexi 8- Morgan 6 and Taylor 5. Blessed to have our little butterfly and our beautiful girls. [url]www.youtube.com/cdhsupport[/url] - Shelby's Journey [img]http://i258.photobucket.com/albums/hh257/gracebutterfly/CDHAwarenessRibbonShelbysmall.jpg[/img]

  10. #20
    DUH-
    I don't know what I am thinking. If you want I can copy it for you Kate and send it in the mail.
    I think there would be any harm in me sharing it with you.
    Let me know either way.
    Stephanie (Shelby's Mom LCDH 7-10-06)- ECMO 7 days- 2 DH repairs- hital hernia repair- Cliff Lip repair- Nissen and Mickey button. Shelby is eating and drinking by mouth now!!! THIS IS FANTASTIC!!!!! Mom to Lexi 8- Morgan 6 and Taylor 5. Blessed to have our little butterfly and our beautiful girls. [url]www.youtube.com/cdhsupport[/url] - Shelby's Journey [img]http://i258.photobucket.com/albums/hh257/gracebutterfly/CDHAwarenessRibbonShelbysmall.jpg[/img]

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