I am so heartbroken for a friend of mine. She gave birth to her son yesterday. They knew that he would probably be born with a Congenital Diaphragmatic Hernia, which he did have, but he was also born with Cornelia De Lange Syndrome. Here are the things that are wrong...hole in the heart, diaphragmatic hernia, deafness, likely severe mental retardation bordering on minimal higher brain function, deformed facial features and limbs, etc. He has been intubated and on life support since birth. The doctors and geneticists agree that his condition is not compatible with life, so they are removing life support today. I can't imagine how difficult of a decision that must be.
If you think about it, say a prayer for this family. His name is Jaron, and his parents are Jessica and Ben.
Update: Baby Jaron is now whole and healthy with Jesus in Heaven. He just passed in the arms of his mom and dad.
I saw that you had commented on this on fb, and clicked to read the status. How sad. Thoughts for your friend and her family as she navigates through this difficult time.