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  1. Alexis jr. aka AJ CDH Journery

    Me and my wife were expecting our second child. We were very excited since we have a 5 year old daughter that has been begging us for a sibling. We had a gender reveal party with family and friends. I cut into the cake and whem i saw the blue feeling I was overcome with joy and the room bursted out into celebration it was one of the most memorable days in my entire life I was going to have a son. 3 months into pregnancy we went for a 3d ultra sound where we discovered our son was diagnosed with ...
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  2. Introducing Myself

    Hello my name is Chelsie, I have a daughter that was born with a left side CDH on December 19th 2017. The day she was born I will never forgot I never knew I could love someone so much, when she was born they noticed she was breathing hard. They rushed her to the nursery to put her under the oxygen tent, at just 12 hours old I get told my daughter has a CDH, this being my first child and not knowing exactly what it was of course my husband and I break out in tears. Then after her pediatrician explains ...

    Updated 03-30-2018 at 04:42 AM by CheslyS

  3. my 10 year old

    Colton was born right side hernia. At 5 days did a repair. Then at 6 months they added a patch. As his body grows the patch will not. He has heart burn pretty bad.

    This past year I have had 2 different x-rays done because of concern. First one he was having sharp stabbing pain. X-ray looked good. We followed up with the Surgeon. He said he has no reason at this time to have any concern. He can not do explorative surgery. He needs more reason for a surgery. Like puking green bile, ...
  4. Son due 11 27 2017 w/ Left-CDH, ultrasound show conflicting isses w/ eyes?

    Our son was diagnosed at 20 week US w/ LCDH. I had amnio done and array came back negative.
    We also had extensive genetic testing prior to becoming pregnant (and have 2 beautiful healthy sons).
    And, I also had the DNA blood test done at 12 weeks, again, all negative.

    We realize there aren't tests for some of the syndromes, but, we are really worried. They ultrasounds I get each week al seem to indicate something different. One said no globes present, one ...
  5. HELP! GI Issues

    I'm hoping there is someone that has dealt with what we are currently going through.

    Our Aiden is 3 months old yesterday. By the Grace of God we came home from the hospital almost a month ago. We are A LONG way away from the 30% chance of survival we were given prior to birth... however, who knew surgery and the NICU would be the easy part!

    Aiden is a Left Sided CDH survivor- his stomach, spleen, intestines and part of his liver herniated in to his chest.