My son was born 5 years ago with a very large omphalocele.  At that time I joined the Mothers of Omphaloceles, also known as the MOOs.  They can be found through http://omphalocele.net/wordpress/, and there are several stories you can view right on the site.  The group is now more active on Facebook, which you can find at http://www.facebook.com/groups/omphalocele/, and which now has over 400 members.  It was through the MOOs that I learned about a repair technique...