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Hello, im Federico from Argentina, now living in Uruguay.
I have a 8yr boy who succesfully went thru a CDH and is now a beautiful and healthy boy, a 10month lovely baby girl, and now, i had the big surprise that the baby we are expecting (now 6months, expecting to be born by mis August), who is a boy, it has also CDH.
Is this somewhat common? Does anyone went thru 2 cases of CDH? i would prefer to be the unique case, but in case you also been thru this, please write to me. Cheers.
Federico, please join our Facebook support groups, for you will see our families don't post much here on the forums much. Social media became popular and our families asked us to start support groups there. We do have private (secret) support groups for CDH families and this would be a great question to post there. If you marked yes to joining these groups when signing up, you would have received invites by email to join these groups. They would be from "Tracy Meats", if you don't see them in your inbox, do look in your spam/junk folder for them. If you marked no to joining them, please consider joining these groups to ask questions of our families.
It is not common, having more than one CDH child is not common, but not unheard of. We do have families in our database with more than one CDH child, several with (2 or more) and we even have families where CDH has occurred outside of siblings, but occurred in the family somewhere along the family tree (cousins, mom and child both having CDH, uncle and nephew, ect...). Research right now is happening in the US and trying to figure out what causes CDH and if there is a genetic link. Your family would be one to participate for sure in this research. Here is their link if you are interested in participating, http://www.cdhgenetics.com/ You would have to speak with them if they are participating with families outside of the United States.
Hope your son on the way is a fighter just like his big brother. I am so sorry you are going through this twice.