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CDH ~ Congenital Diaphragmatic Hernia

amtay825amtay825 member
in High-Risk Pregnancy
I had my anatomy scan yesterday and my baby boy was diagnosed with congenital diaphragmatic hernia. We're not sure yet of the severity of it; we're currently waiting to get in for a fetal MRI and then we'll see a genetic counselor. Does anyone have any experience or feedback at all on this? Thanks....

                            10/16/04 ~ lost our first baby boy at 20 weeks due to IC

                                              3/05 ~ another loss at 12 weeks

         2/14/06 ~ Our sweet valentine miracle was born after a nightmarish 8 months!

                    Surprise Baby Boy, born sleeping at 31 weeks on 9/21/14

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Re: CDH ~ Congenital Diaphragmatic Hernia

  • danalawrencedanalawrence member
    Hi! First and foremost, HUGS. One of my best friends faced this last year. Please consider calling CHOP tomorrow. They are by far the best at this, and there is a ton of help available no matter where you live. https://www.chop.edu/service/fetal-diagnosis-and-treatment/fetal-diagnoses/congenital-diaphragmatic-hernia-cdh.html
    D (34), J (37) and T3 (ages 2, 2 and brand new)
    Nov '10: IVF#1: BFP! Girl. Missed m/c at 14 weeks. Devastated
    Apr '11: IVF#2: BFP! Twin Girls born on Dec 3, 2011 at 31w5d! One month in NICU.
    Oct '13: IVF#3: BFP! Girl born Jun 19, 2014 at 38w3d!
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  • -T--T- member
    My son was born with CDH. Check out https://www.cherubs-cdh.org, they have a ton of information available. I strongly encourage you to deliver at a hospital that has ECMO and is well versed in all things CDH. Feel free to PM me.
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  • amtay825amtay825 member
    Thank you both so much :) I am still waiting on the call for the MRI to find out for sure and if so, how severe it is. Then we'll meet with the genetic counselor and such. I checked those out, thanks again for the info :)

                                10/16/04 ~ lost our first baby boy at 20 weeks due to IC

                                                  3/05 ~ another loss at 12 weeks

             2/14/06 ~ Our sweet valentine miracle was born after a nightmarish 8 months!

                        Surprise Baby Boy, born sleeping at 31 weeks on 9/21/14

    Report Reply
  • nprovost88nprovost88 member
    Sending prayers your way! I was born in 1988 and I am a CDH survivor myself and currently expecting my first child! I kicked CDH butt and I hope your cherub does too!! Please feel free to ask me any questions that you may have - I'm no doctor, but sometimes firsthand experience is helpful knowledge. Having been born with CDH was, and still to this day, the most difficult thing my parents have ever experienced, but survival stories happen all the time! Good luck with the fetal MRI!!
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  • faerynsmomfaerynsmom member
    I received the diagnosis of LCDH for my baby girl two weeks ago at 20 weeks.  They gave us the initial survival rate of 10%, due to her small LHR and liver and stomach being up in chest cavity.  Second round of testing yesterday showed no apparent other defects with heart, lip/palate, chromosomal, and liver may not be up as much as they initially thought, though her LHR is still 0.8.  It feels like a roller coaster ride, not wanting to hope, yet grabbing hold of each piece of good news like its a life boat.  Anyway, I just wanted to share, to say you aren't alone, there are so many of us who have been thru and are still going thru this with you.  Prayers and well wishes for good results for you and all your babies.
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