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KellyB

Just found out my baby has RCDH......

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I am 32 weeks pregnant with a baby boy (Parker). I found out last week my baby has RCDH. I am scared to death by everything I have read so far. Any words of wisdom or help would be greatly appreciated. Emotionally I am at a loss for words. Just praying every second I have a chance. Thank you.
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  1. Lynn Howard's Avatar
    Kelly, I don't have any great words, but I remember the waiting and wondering. That was probably the hardest part for us. Our son, born with RCDH< just had his 5th birthday on 10/24/13. I didn't find this forum until after he was born but received great comfort and encouragement just reading everyone's posts. Hope all goes well for you.
  2. KellyB's Avatar
    Thank you very much Lynn. Every day is hard.... especially justthe waiting and not knowing.
  3. Jayne's Avatar
    Hello Kelly,
    My daughter was born with RCDH 17 years ago. Thankfully all she has to show for it is a scar. I will pray for your Parker. It is wonderful that you have found this site it is a great resource. Peace be with you and your family.
  4. AnthonyCarrol's Avatar
    hi Kelly, my daughter Elana was born 11 1/2 years ago LCDH x 1.
    the docs told us that normally CDH babies go home within 3 months, but of course our treasure had to be different lol. due to complications, colds, chest infections and 2 re- herniations (which they told us was unheard of) we ended up living in hospital with her for almost 2 years. while other CDH babies were coming and going home without problems. anyway here she is almost 12 years later goes to school, is a model student, determined, clever, is in a group of advanced kids in all subjects, she has this kind of positive aura she gives off to other kids,i have never heard another kid being mean to her, even younger kids are attracted to her somehow, ahead of other kids when there is a group. she is so good natured, and easy going. kids who go through this type of thing seem to subconsciously have this positive outlook and appreciation for life. you should try to always remain positive and look forward to enjoying your baby's life, even through the setbacks we had with Elana, I always stayed positive because she made me feel that way from when she was born. mammy didn't get to hold her but I got to hold her hand and she didn't cry (no sound due to the deflated lung) but she tried and she looked me in the eye and squeezed my finger. I knew from then we had a fighter. sorry if ive rambled on. but if you can take the positives out of this fraction of Elana's story, maybe they will help boost your confidence and give you little more belief that things will turn out much better than you think. no one can tell you anything that is going to take away the worry completely. that's something that stays with us all our lives. take that from a father of 4 lol. you never stop worrying about them.